Re: Got Fired by my Rheumatologist...!..

December 17, 2004

(((((((((((Betty))))))))) first for having such a horrible time with your rhuemy. I'm sorry that he did that to you and you need to find another doc with less ego. Some of these docs really get to me. I don't know of a rheumy up there, however, my brother is an internationally known colon and rectal surgeon in New Jersey. I will be speaking with him over the weekend and will ask him for a referral for you. My brother has a kind bedside manner and will refer you to someone who is like him. Just hang in there. In addition, I do know there are some Stilligans up in your area and someone must know a good rhuemy up there, but I will still check and see what I can come up with. My brother is the one who got me into the Cleveland Clinic and they are the ones who saved me. Dry your eyes. This doc doesn't deserve your tears. We can mentally labotomize him. LOL.

One thing I did want to bring to your attention. If your pain is that extreme taking Vicodin is not a bad alternative. I have been on narcotics now for going on seven years and I function just fine. I take Lortab 7.5 mgs t.i.d. and MSContin 30 mgs b.i.d. and I can drive, go to school, take care of my child, and my dogs. Yes, you do get sleepy in the beginning and a bit loopy, but that passes. I think it is more of a personal choice whether or not to try narcotics. For me it was a necessity and my pain is managed pretty effectively. I know that everyone is concerned with addiction, but I also have found when these drugs are taken as directed, they aren't as addictive as people would like to believe. I've gone for periods at a time, weeks, even months without my narcotics and while I hurt worst, I didn't go through withdrawal symptoms. If you are hurting that bad, please take something for relief. Aleve works wonders in between pain meds also. I can't take Celebrex because of my pancreas and it did cause me to go into a full blown pancreatic attack. So, it is clearly up to you.

Hang in there and I will get back to you as soon as I speak with my brother. Hope this helps. Talk to you soon.

Much love,

Terry

December 18, 2004

Betty,

I live in NJ. I am about 1 hour and 15 minutes from you. Love to go to Lancaster to shop! But any way, I have a great Rheumy in Haddon Heights NJ. His name is Mark Fisher. Phone # (856)547-8004.

Take Care,

Carey

December 18, 2004

Dear Betty,

I normally don't reply to any of the emails. I don't have Still's, but my

daughter does. I joined the group to learn more and I glean a lot of info

to share with my daughter. She doesn't have email.

I feel bad about what happened to you. No doctor should ever do that to a

patient. Are you willing to go up to Boston? Tuft's University has

probably done the most research on Still's. The rheumie who diagonsed my

daughter is wonderful. Her name is Dr. Biggee. She is great and is

caring and sympathetic. You could go up for a consulatation there.

Let me explain how involved she is with her patients. For awhile, my

daughter's insurance paid to go see Dr. Biggee. Last summer, they said

they would no longer pay to go see her since she is out of the " loop " .

My daughter lives in New Hampshire. Dr. Biggee was upset about that and

she even wrote to the insurance company about the seriousness of the

disease and her experience with Still's. The insurance still refused and

said my daughter would need to find a rheumie in NH. Dr. Biggee told her

to find one in NH and she would work through the rhuemie up there with no

charge. Dr. Biggee and her local rhuemie consult constantly and she

makes recommendations to my daughter's current rheumie. I must also say

that the local rheumie is great too. He is willing to consult and has

even gone to medical seminars to learn more about Still's. She is very

fortunate.

I don't have Dr. Biggee's office phone number, but I did send it to Bob

and Carol to add to the doctor's list. Or let me know and I will get if

from my daughter and send it to you. I know it's a haul from where you

live, but she could possibily give you some good advice and direction even

in one visit.

Another thought. My daughter has been going to a Chinese herbalist in

Boston. While she has problems with the drugs she takes, most doing very

little for her, she does see improvements with the different herbal

mixtures she is given. Dr. Tao, her herbalist, believes he will even be

able to get her off all drugs eventually. Have you considered seeking

alternative treatment to work along with your drug program?

Take care and have a good holiday despite the discouragement you currently

have.

Regards,

Joe

I just cannot believe what happened to me..I went to my rheumatologist

> yesterday for a check up, I have been really declining fast with all the

> side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel

> dizzy (even though my husband said he has known that your years..Funny

> guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are

> dropping, my sed rate is raising and I am in pain most of the time..So

> when I went to my apt, I had written down some questions for him,,which I

> thought it was the right thing to do?..He said " " If the MXT makes you sick

> stop it " " , then he quickly proceeded to barely take my blood pressure and

> told me that I need to see my family doctor , because none of the above

> were related to the treatment he had prescribed..I said, very nicely...But

> my family doctor told me on Monday to come and see you...?..When I

> question about the dizziness w embrel and MXT he went nuts..he said " I am

> a national expert an I had never heard of such a thing.. " I

> told him that in our group , some other people had expressed to me that

> they had the same symptoms and he totally ignored me, then he said maybe

> we need to try cymbalta..and I said, that might not be a bad idea, there

> is a lady in our group that is taking that and find it very helpful..as

> soon as I said that he just said. " .read more about it...?...???? " then he

> offered to put me on vicodin 3 times a day..Well, there is a little

> problem, I am a nurse, and I do home care managing, that means I am

> driving all the time and vicodin and driving do not mix...I did not get

> it...?..anyway, I said the problem is that I am down from the pain , my

> spirits are down, I feel depressed from been in discomfort and pain all

> the time, and I really do not know if the meds are worth the side

> effects?..at that point, he just about screamed at me and said.. " stop

> everything and come and see me when you are ready to try again " " I left

> his office so upset, he even had the nerve to wish me a happy

> holiday.(.my thoughts were not too kind at point.) He told his

> receptionist that there was no further apt needed...I went to my car and

> cry...I called my wonderful husband at work ..(poor thing he thought I

> was hurt in an accident ,because of how upset I was.). I feel that none

> of the doctors that I deal with, really understand.. I am not

> disrespectful to anyone, but I do believe that I have the right to be

> involve in my medical care and ask questions, seek options..is this too

> much to ask?..After that I felt worse all day, got a headache, my eyes

> were all red ( my poor patients probably were thinking I was getting too

> much eggnog somewhere). and when I got home , I went straight to

> bed..this is not right I have two boys that need me..they are still

> little and it is hard for them to understand why Mom get so tired all the

> time..they call it the " Red Cheeks Disease " ..But anyway..I do not know

> what next..I still have some embrel to get me throught the holidays and

> ultracet for

> everyday ..but I think that I need to find someone who will not have such

> a great ego that is willing to talk with me..Sorry for venting so

> much..this has been one of the most upsetting experience since I was

> diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster

> PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone

> let me know..I saw a name of a doctor in PA in the list of MD that was

> giving to me when I first joined, I might try him..Mark Lopatin?..does

> anyone know him..Funny my EX rhumatologist name is not in the list even

> though, he said he is a national expert?..Oh, well enough..I need to be

> kind around the holiday times at least...thanks for listening and

> reading.. I am sorry about my spelling, typing and grammar..I am not an

> American by birth and English in my second language...take care.. Peace

> and love to all.

> Betty

>

> __________________________________________________

>

December 18, 2004

Betty,

I agree 150% with Terry, get a new doctor. You should never be treated like that, and I don't care what kind of bad day he may have bee having, if he could not keep it together he should not see patients. I also feel as Terry about the narcotic. I take Percocet every day. I can function and drive while on it, I just don't get in my car right after I take it, when I am somewhat loopy. I can also stop and have no problems either. I only take them when I need them, my tolerance has gone up but so many people get real confused on the difference between tolerance and addiction. Addiction is a concern for me as those type issues run in my family but I am very up front with my doctors and am vigilante in self monitoring my use. I do hope you find a better rhuemy. I have had similar experiences myself and know how devastating it can be. Imagine seeing a doctor like that with normal labs and no visible swelling. It has taken me a year since I moved home with my Mother to cultivate a top notch health care team, but we all have to remember that we are the captains of our teams and the other members need to be team players or get off the team!

Lynn

December 18, 2004

Dear <

It sounds like your doctor is having some ego issues that are not your

fault. I have a doc in philadelphia who is great, maybe he can help!

If you would like his phone number let me know. You don't need your

doctor causing this stress for you- you deserve better. I also think

that some doctors don't like being told by the patient something is

wrong w/ us. I guess its an ego thing which is not your fault. I had a

doctor that insisted that I was making things up! Off to the curb he

went! lol. be kind to yourself and please try someone new. it is

important to feel a comfortable relationship w/ your doctor.

love and well wishes!

shar

> I just cannot believe what happened to me..I went to my

> rheumatologist yesterday for a check up, I have been really declining

> fast with all the side effects from MXT, embrel and Prednisone. I have

> a GI ulcer, feel dizzy (even though my husband said he has known that

> your years..<01.gif>Funny guy.) feel totally weak and wiped out, my

> Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am

> in pain most of the time..So when I went to my apt, I had written down

> some questions for him,,which I thought it was the right thing to

> do?..He said " " If the MXT makes you sick stop it " " , then he quickly

> proceeded to barely take my blood pressure and told me that I need to

> see my family doctor , because none of the above were related to the

> treatment he had prescribed..I said, very nicely...But my family

> doctor told me on Monday to come and see you...?..When I question

> about the dizziness w embrel and MXT he went nuts..he said " I am a

> national expert an I had never heard of such a thing.. " I told him

> that in our group , some other people had expressed to me that they

> had the same symptoms and he totally ignored me, then he said maybe we

> need to try cymbalta..and I said, that might not be a bad idea, there

> is a lady in our group that is taking that and find it very

> helpful..as soon as I said that he just said. " .read more about

> it...?...???? " then he offered to put me on vicodin 3 times a

> day..Well, there is a little problem, I am a nurse, and I do home care

> managing, that means I am driving all the time and vicodin and driving

> do not mix...I did not get it...?..anyway, I said the problem is that

> I am down from the pain , my spirits are down, I feel depressed from

> been in discomfort and pain all the time, and I really do not know if

> the meds are worth the side effects?..at that point, he just about

> screamed at me and said.. " stop everything and come and see me when

> you are ready to try again " " I left his office so upset, he even had

> the nerve to wish me a happy holiday.(.my thoughts were not too kind

> at point<15.gif>.) He told his receptionist that there was no further

> apt needed...I went to my car and cry...I called my wonderful husband

> at work ..(poor thing he thought I was hurt in an accident ,because

> of how upset I was.). I feel that none of the doctors that I deal

> with, really understand.. I am not disrespectful to anyone, but I do

> believe that I have the right to be involve in my medical care and ask

> questions, seek options..is this too much to ask?..After that I felt

> worse all day, got a headache, my eyes were all red ( my poor patients

> probably were thinking I was getting too much eggnog

> somewhere<03.gif>). and when I got home , I went straight to bed..this

> is not right I have two boys that need me..they are still little and

> it is hard for them to understand why Mom get so tired all the

> time..they call it the " Red Cheeks Disease " <01.gif>..But anyway..I do

> not know what next..I still have some embrel to get me throught the

> holidays and ultracet for everyday ..but I think that I need to find

> someone who will not have such a great ego that is willing to talk

> with me..Sorry for venting so much..this has been one of the most

> upsetting experience since I was diagnosed. Does anyone knows any

> doctors in PA area..I live in Lancaster PA..willing to go to D.C. ,

> Philly , Baltimore..?..if you know of anyone let me know..I saw a name

> of a doctor in PA in the list of MD that was giving to me when I first

> joined, I might try him..Mark Lopatin?..does anyone know him..Funny my

> EX rhumatologist name is not in the list even though, he said he is a

> national expert?..Oh, well enough..I need to be kind around the

> holiday times at least...thanks for listening and reading.. I am

> sorry about my spelling, typing and grammar..I am not an American by

> birth and English in my second language...take care.. Peace and love

> to all.

> Betty

>

> __________________________________________________

>

December 18, 2004

Betty I am in Central NJ My Rheumy is a great guy, very understanding always listens. I bring him lists of questions every week, and he always listens even if I make him stay late. I will be happy to provide you with his information. Is Jersey to Far for you to go? His name is Rihacek

19 Clyde Road, Somerset, NJ 08873 His phone is Maybe you can Mapquest his office from your house to see how long it would take you to get to him.

Just incase your interested. Don't let that doctor get to you, you deserve a doctor who will listen and support you.

Keep your Spirits up and hang in there! You'll get through this!

Lara in NJ

Got Fired by my Rheumatologist...!..

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 18, 2004

Betty

I had a wonderful doctor in Lebanon, PA by the name of V. Kantor, MD. I

believe he is still practicing with Lebanon Internal Medicine Associates. He

quickly and accurately diagnosed and aggressively treated my AOSD back in 1991

before I moved to AZ. I was misdiagnosed by another rheumatologist for over a

year until I was blessed with finding him through Hershey Medical Center.

>

I hope he is still taking new patients. I will never forget him getting me on

the right medical path. It was a major turning point in my life.

Good luck!

Patty H.

P.S. I was born and raised in a sleepy little town in northern Lancaster

County. Now I am a desert dweller... forever.

>

> Date: 2004/12/18 Sat AM 12:03:32 EST

> To: Stills disease group <stillsdisease >

> Subject: Got Fired by my Rheumatologist...!..

>

> I just cannot believe what happened to me..I went to my rheumatologist

yesterday for a check up, I have been really declining fast with all the side

effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even

though my husband said he has known that your years..Funny guy.) feel totally

weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is

raising and I am in pain most of the time..So when I went to my apt, I had

written down some questions for him,,which I thought it was the right thing to

do?..He said " " If the MXT makes you sick stop it " " , then he quickly proceeded to

barely take my blood pressure and told me that I need to see my family doctor ,

because none of the above were related to the treatment he had prescribed..I

said, very nicely...But my family doctor told me on Monday to come and see

you...?..When I question about the dizziness w embrel and MXT he went nuts..he

said " I am a national expert an I had never heard of such a thing.. " I

> told him that in our group , some other people had expressed to me that they

had the same symptoms and he totally ignored me, then he said maybe we need to

try cymbalta..and I said, that might not be a bad idea, there is a lady in our

group that is taking that and find it very helpful..as soon as I said that he

just said. " .read more about it...?...???? " then he offered to put me on vicodin

3 times a day..Well, there is a little problem, I am a nurse, and I do home care

managing, that means I am driving all the time and vicodin and driving do not

mix...I did not get it...?..anyway, I said the problem is that I am down from

the pain , my spirits are down, I feel depressed from been in discomfort and

pain all the time, and I really do not know if the meds are worth the side

effects?..at that point, he just about screamed at me and said.. " stop everything

and come and see me when you are ready to try again " " I left his office so

upset, he even had the nerve to wish me a happy

> holiday.(.my thoughts were not too kind at point.) He told his receptionist

that there was no further apt needed...I went to my car and cry...I called my

wonderful husband at work ..(poor thing he thought I was hurt in an accident

,because of how upset I was.). I feel that none of the doctors that I deal with,

really understand.. I am not disrespectful to anyone, but I do believe that I

have the right to be involve in my medical care and ask questions, seek

options..is this too much to ask?..After that I felt worse all day, got a

headache, my eyes were all red ( my poor patients probably were thinking I was

getting too much eggnog somewhere). and when I got home , I went straight to

bed..this is not right I have two boys that need me..they are still little and

it is hard for them to understand why Mom get so tired all the time..they call

it the " Red Cheeks Disease " ..But anyway..I do not know what next..I still have

some embrel to get me throught the holidays and ultracet for

> everyday ..but I think that I need to find someone who will not have such a

great ego that is willing to talk with me..Sorry for venting so much..this has

been one of the most upsetting experience since I was diagnosed. Does anyone

knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. ,

Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a

doctor in PA in the list of MD that was giving to me when I first joined, I

might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist

name is not in the list even though, he said he is a national expert?..Oh, well

enough..I need to be kind around the holiday times at least...thanks for

listening and reading.. I am sorry about my spelling, typing and grammar..I am

not an American by birth and English in my second language...take care.. Peace

and love to all.

> Betty

>

> __________________________________________________

>

December 18, 2004

..that is awful..do you mind telling me his name??? If you are allowed. My name is Levinson and I am a nurse with stills...I live 7 miles outside of Philly, I think my doc is pretty good..His name is Dr Albert at the University of Penn...since we have so much in common..why not a doctor too,,,feel better...Hugs Liz (moorestown Nj..near Cherry Hill )

December 18, 2004

Hi Betty,

It sounds like to me the Doc obviously has no idea how to handle "Stills" and rather than look like the idiot he probably is, decided to make you feel like one. I think the term for this kind of person is a Narcisist. Remember, Stills is very rare. I think I read that it is 0.0006% of the world population. My Rheumy has been in practice for 35-40 years and has only seen 2 other cases! This is out of thousands of patients. That Doc is an ass to make you feel that way. My advice would be to obviously find another (which you are doing), but do not mention the asshole doctor to your new one. The reason: no matter how awful other docs may be, they will defend one another and you don't want to start off on the wrong foot with the new one. Hang in there and don't worry about anymore about that narcisistic idiot!

Post your free ad now! Yahoo! Canada Personals

December 18, 2004

Hi Betty,

Do I hear you! I have been to four and the one I have now has seen me for 14 years and is now acting like, I can no longer help you attitude. I think it's time you change. I have the problem that there is only one in my Town and one Out of my town. That;s if I don't want to drive over and hour.

I know just how you felt and I too have had many times I have cried in the car about the way I was treated. I have had a few that act like it's all in my head. Or if someone else has that problem with their medication then I take it on too. Well I have news for all those doctors. We don't need to make up more problems, the pain is ENOUGH of a problem and when one has children as I do too it's even harder on us.

Can your family doctor recomend a different doctor? Or do what I do look it the yellow pages.

Here is a Big HUG! Ginger Severson wrote:

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went

nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are

ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need

me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at

least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 18, 2004

Betty,

I cannot believe your doctor treated you that way! Sounds to me like someone needs to remind him of that part of the Hippocratic Oath that says, "First, do no harm". This guy is a total jerk and you are well rid of him. I think he was just covering for his own incompetence. It would be dangerous for your health if you continued to see him.

I strongly encourage you to report this doctor to the American Medical Association. You need a doc that went in to practice to actually HEAL people, not someone who wants to be a god.

Good luck in your search for a new Rheumy and I'm hoping you feel better soon.

Hugs,

Gail in KY Severson wrote:

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went

nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are

ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need

me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at

least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

, I have been seeing Dr. Cantor in Lebanon, and he is very thorough, if nothing else. He has dealt with Stills patients before, and currently has me.

Let me know if you want his number, as I can dig it out for you.

Kirk..(finally home from the hospital, yet still have a headache and bo answers!!!)

Got Fired by my Rheumatologist...!..

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

First, I'm so sorry for what you had to go through. I go to Dr. Lopatin (you mentioned he is listed on the stills website). He is the Dr. who first diagnosed my Stills disease back in 1997. I am very happy with his treatment. It seems to me that his philosophy is to work together to find out what works. I began a bad flare about 8 months ago. We began changing/adding medications. At this point I'm now off steroids and I'm in day 16 of no fever/rash/fatigue. I feel like he worked with me through the whole process and I'm grateful for his treatment. I'm currently on Naproxen, Methotrexate, Plaquinel, and Zoloft. It took awhile to find the right combination and dose, but it seems to be working. I would certainly recommend him. Please email me if you have any specific questions or want any other info on him.

Hang in there,

Hugs,

Peggy

Quakertown, PA

December 19, 2004

Joe Thanks for your wonderful letter of advice..I will appreciate Dr Bigee's number and address, Boston is a beatiful city I hear, and I even have a friend that has a son that lives there, and I know she would be up for a road trip if I decided to go..Thanks again and I feel that your daughter is blessed to have such a wonderful involved and supporting Dad and her Doctors. God Bless and happy holidays. thanks a bunch, Love, Bettyph wrote:

Dear Betty,I normally don't reply to any of the emails. I don't have Still's, but mydaughter does. I joined the group to learn more and I glean a lot of infoto share with my daughter. She doesn't have email.I feel bad about what happened to you. No doctor should ever do that to apatient. Are you willing to go up to Boston? Tuft's University hasprobably done the most research on Still's. The rheumie who diagonsed mydaughter is wonderful. Her name is Dr. Biggee. She is great and iscaring and sympathetic. You could go up for a consulatation there.Let me explain how involved she is with her patients. For awhile, mydaughter's insurance paid to go see Dr. Biggee. Last summer, they saidthey would no longer pay to go see her since she is out of the "loop". My

daughter lives in New Hampshire. Dr. Biggee was upset about that andshe even wrote to the insurance company about the seriousness of thedisease and her experience with Still's. The insurance still refused andsaid my daughter would need to find a rheumie in NH. Dr. Biggee told herto find one in NH and she would work through the rhuemie up there with nocharge. Dr. Biggee and her local rhuemie consult constantly and shemakes recommendations to my daughter's current rheumie. I must also saythat the local rheumie is great too. He is willing to consult and haseven gone to medical seminars to learn more about Still's. She is veryfortunate.I don't have Dr. Biggee's office phone number, but I did send it to Boband Carol to add to the doctor's list. Or let me know and I will get iffrom my daughter and send it to you. I know it's a haul from where youlive, but she could possibily give

you some good advice and direction evenin one visit.Another thought. My daughter has been going to a Chinese herbalist inBoston. While she has problems with the drugs she takes, most doing verylittle for her, she does see improvements with the different herbalmixtures she is given. Dr. Tao, her herbalist, believes he will even beable to get her off all drugs eventually. Have you considered seekingalternative treatment to work along with your drug program?Take care and have a good holiday despite the discouragement you currentlyhave.Regards,JoeI just cannot believe what happened to me..I went to my rheumatologist> yesterday for a check up, I have been really declining fast with all the> side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel> dizzy (even though my husband said he has known that your years..Funny> guy.) feel totally weak

and wiped out, my Hematocrit, Hemoglobin are> dropping, my sed rate is raising and I am in pain most of the time..So> when I went to my apt, I had written down some questions for him,,which I> thought it was the right thing to do?..He said ""If the MXT makes you sick> stop it"", then he quickly proceeded to barely take my blood pressure and> told me that I need to see my family doctor , because none of the above> were related to the treatment he had prescribed..I said, very nicely...But> my family doctor told me on Monday to come and see you...?..When I> question about the dizziness w embrel and MXT he went nuts..he said " I am> a national expert an I had never heard of such a thing.." I> told him that in our group , some other people had expressed to me that> they had the same symptoms and he totally ignored me, then he said maybe> we need to try cymbalta..and I said, that might not be a

bad idea, there> is a lady in our group that is taking that and find it very helpful..as> soon as I said that he just said.".read more about it...?...????" then he> offered to put me on vicodin 3 times a day..Well, there is a little> problem, I am a nurse, and I do home care managing, that means I am> driving all the time and vicodin and driving do not mix...I did not get> it...?..anyway, I said the problem is that I am down from the pain , my> spirits are down, I feel depressed from been in discomfort and pain all> the time, and I really do not know if the meds are worth the side> effects?..at that point, he just about screamed at me and said.."stop> everything and come and see me when you are ready to try again"" I left> his office so upset, he even had the nerve to wish me a happy> holiday.(.my thoughts were not too kind at point.) He told his> receptionist that there was

no further apt needed...I went to my car and> cry...I called my wonderful husband at work ..(poor thing he thought I> was hurt in an accident ,because of how upset I was.). I feel that none> of the doctors that I deal with, really understand.. I am not> disrespectful to anyone, but I do believe that I have the right to be> involve in my medical care and ask questions, seek options..is this too> much to ask?..After that I felt worse all day, got a headache, my eyes> were all red ( my poor patients probably were thinking I was getting too> much eggnog somewhere). and when I got home , I went straight to> bed..this is not right I have two boys that need me..they are still> little and it is hard for them to understand why Mom get so tired all the> time..they call it the "Red Cheeks Disease"..But anyway..I do not know> what next..I still have some embrel to get me throught the holidays

and> ultracet for> everyday ..but I think that I need to find someone who will not have such> a great ego that is willing to talk with me..Sorry for venting so> much..this has been one of the most upsetting experience since I was> diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster> PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone> let me know..I saw a name of a doctor in PA in the list of MD that was> giving to me when I first joined, I might try him..Mark Lopatin?..does> anyone know him..Funny my EX rhumatologist name is not in the list even> though, he said he is a national expert?..Oh, well enough..I need to be> kind around the holiday times at least...thanks for listening and> reading.. I am sorry about my spelling, typing and grammar..I am not an> American by birth and English in my second language...take care.. Peace> and love to

all.> Betty>>>> __________________________________________________>

December 19, 2004

Thanks Lynn for your advice and support, I will continue in search of the right doctor to addressed my needs..I appreciated your input and I will look into narcotics if the pain continues...(I did keep the scripit for vicodin he wrote before he fired me..)I will have it done at the pahrmacy and try at least over the holidays when I am home., to see how things work for me..thanks BettyLynn D wrote:

Betty,

I agree 150% with Terry, get a new doctor. You should never be treated like that, and I don't care what kind of bad day he may have bee having, if he could not keep it together he should not see patients. I also feel as Terry about the narcotic. I take Percocet every day. I can function and drive while on it, I just don't get in my car right after I take it, when I am somewhat loopy. I can also stop and have no problems either. I only take them when I need them, my tolerance has gone up but so many people get real confused on the difference between tolerance and addiction. Addiction is a concern for me as those type issues run in my family but I am very up front with my doctors and am vigilante in self monitoring my use. I do hope you find a better rhuemy. I have had similar experiences myself and know how devastating it can be. Imagine seeing a doctor like that with normal labs and no visible swelling. It has

taken me a year since I moved home with my Mother to cultivate a top notch health care team, but we all have to remember that we are the captains of our teams and the other members need to be team players or get off the team!

Lynn

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The

International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. __________________________________________________

December 19, 2004

Sharon : How long have you had this Doctor?..Is he open to your questions and truly involve in your care 100%?..Please, send me his address and phone number..This might be a good choice for me..thanks a bunch...BettySharon wrote:

Dear <It sounds like your doctor is having some ego issues that are not your fault. I have a doc in philadelphia who is great, maybe he can help!If you would like his phone number let me know. You don't need your doctor causing this stress for you- you deserve better. I also think that some doctors don't like being told by the patient something is wrong w/ us. I guess its an ego thing which is not your fault. I had a doctor that insisted that I was making things up! Off to the curb he went! lol. be kind to yourself and please try someone new. it is important to feel a comfortable relationship w/ your doctor.love and well wishes!shar> I just cannot believe what happened to me..I went to my > rheumatologist yesterday for a check up, I have been

really declining > fast with all the side effects from MXT, embrel and Prednisone. I have > a GI ulcer, feel dizzy (even though my husband said he has known that > your years..<01.gif>Funny guy.) feel totally weak and wiped out, my > Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am > in pain most of the time..So when I went to my apt, I had written down > some questions for him,,which I thought it was the right thing to > do?..He said ""If the MXT makes you sick stop it"", then he quickly > proceeded to barely take my blood pressure and told me that I need to > see my family doctor , because none of the above were related to the > treatment he had prescribed..I said, very nicely...But my family > doctor told me on Monday to come and see you...?..When I question > about the dizziness w embrel and MXT he went nuts..he said " I am a > national expert an I had never heard

of such a thing.." I told him > that in our group , some other people had expressed to me that they > had the same symptoms and he totally ignored me, then he said maybe we > need to try cymbalta..and I said, that might not be a bad idea, there > is a lady in our group that is taking that and find it very > helpful..as soon as I said that he just said.".read more about > it...?...????" then he offered to put me on vicodin 3 times a > day..Well, there is a little problem, I am a nurse, and I do home care > managing, that means I am driving all the time and vicodin and driving > do not mix...I did not get it...?..anyway, I said the problem is that > I am down from the pain , my spirits are down, I feel depressed from > been in discomfort and pain all the time, and I really do not know if > the meds are worth the side effects?..at that point, he just about > screamed at me and

said.."stop everything and come and see me when > you are ready to try again"" I left his office so upset, he even had > the nerve to wish me a happy holiday.(.my thoughts were not too kind > at point<15.gif>.) He told his receptionist that there was no further > apt needed...I went to my car and cry...I called my wonderful husband > at work ..(poor thing he thought I was hurt in an accident ,because > of how upset I was.). I feel that none of the doctors that I deal > with, really understand.. I am not disrespectful to anyone, but I do > believe that I have the right to be involve in my medical care and ask > questions, seek options..is this too much to ask?..After that I felt > worse all day, got a headache, my eyes were all red ( my poor patients > probably were thinking I was getting too much eggnog > somewhere<03.gif>). and when I got home , I went

straight to bed..this > is not right I have two boys that need me..they are still little and > it is hard for them to understand why Mom get so tired all the > time..they call it the "Red Cheeks Disease"<01.gif>..But anyway..I do > not know what next..I still have some embrel to get me throught the > holidays and ultracet for everyday ..but I think that I need to find > someone who will not have such a great ego that is willing to talk > with me..Sorry for venting so much..this has been one of the most > upsetting experience since I was diagnosed. Does anyone knows any > doctors in PA area..I live in Lancaster PA..willing to go to D.C. , > Philly , Baltimore..?..if you know of anyone let me know..I saw a name > of a doctor in PA in the list of MD that was giving to me when I first > joined, I might try him..Mark Lopatin?..does anyone know him..Funny my > EX rhumatologist name is not

in the list even though, he said he is a > national expert?..Oh, well enough..I need to be kind around the > holiday times at least...thanks for listening and reading.. I am > sorry about my spelling, typing and grammar..I am not an American by > birth and English in my second language...take care.. Peace and love > to all.> Betty>> __________________________________________________>

December 19, 2004

thanks for the info Patty, I will check him out, I think that my incurance covers, HMC and if he is connected to it somehow?..maybe they will cover him,,but if he is good, ..Money is just money..when it comes to health and feeling better...Thanks again..WHere in Lancaster PA were you born?. The Visiting Nurses Associtation that I work for cover the whole county, so I probably know your sleepy little town.....I hear AZ is great for RA...maybe I need to move someday..?..Thanks again. Love, Bettyhackwoman@... wrote:

BettyI had a wonderful doctor in Lebanon, PA by the name of V. Kantor, MD. I believe he is still practicing with Lebanon Internal Medicine Associates. He quickly and accurately diagnosed and aggressively treated my AOSD back in 1991 before I moved to AZ. I was misdiagnosed by another rheumatologist for over a year until I was blessed with finding him through Hershey Medical Center.> I hope he is still taking new patients. I will never forget him getting me on the right medical path. It was a major turning point in my life.Good luck!Patty H.P.S. I was born and raised in a sleepy little town in northern Lancaster County. Now I am a desert dweller... forever.> > Date: 2004/12/18 Sat AM 12:03:32 EST> To: Stills disease group

<stillsdisease >> Subject: Got Fired by my Rheumatologist...!..> > I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I

question about the dizziness w embrel and MXT he went nuts..he said " I am a national expert an I had never heard of such a thing.." I> told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and

said.."stop everything and come and see me when you are ready to try again"" I left his office so upset, he even had the nerve to wish me a happy> holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need me..they are still little and it is hard for them to understand

why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for> everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth

and English in my second language...take care.. Peace and love to all.> Betty> > > > __________________________________________________>

December 19, 2004

Ginger my dear,,,Are you sure there is nobody else in the area to help you?..I have received such an incredible number of doctors and suggetions in the last 24 hours form our group, that maybe if you can give us your location, someone might come up with a good one for you..If you have to drive far, find a good friend to ride with you, maybe even stop for lunch..?, or get a ""Happy Book""on tape and listen t it on your way , it make the driving much more bearable and If the MD is better and can help you , It is worth your time..I am tired of Doctors with attitutes, we deserve better and I am willing to find someone...?I will pray for you and that you also find the rigth person to help..It is not a fun place to be specially when you are in pain..Take care and thanks for your support, Love..hugs BettyGinger Sunshine wrote:

Hi Betty,

Do I hear you! I have been to four and the one I have now has seen me for 14 years and is now acting like, I can no longer help you attitude. I think it's time you change. I have the problem that there is only one in my Town and one Out of my town. That;s if I don't want to drive over and hour.

I know just how you felt and I too have had many times I have cried in the car about the way I was treated. I have had a few that act like it's all in my head. Or if someone else has that problem with their medication then I take it on too. Well I have news for all those doctors. We don't need to make up more problems, the pain is ENOUGH of a problem and when one has children as I do too it's even harder on us.

Can your family doctor recomend a different doctor? Or do what I do look it the yellow pages.

Here is a Big HUG! Ginger Severson wrote:

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went

nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are

ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need

me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at

least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

Thanks Gail, I am planning to take some steps to make sure he is been checked by someone, there is something wrong with him?..cannot figured it out?.I will speak with my primary FMD who is a close friend of mine. I am also in touch w a colleague of mine, who is now a lawyer. She became a lawyer after having her masters in Nursing , because of her own personal experience with Doctors etc..etc..and now watch out..she is really out there been a good advocate for patients and I already spoke with her, she will be checking some things out form me, so that this does not happened to anyone again..thanks for the support., BettyGail wrote:

Betty,

I cannot believe your doctor treated you that way! Sounds to me like someone needs to remind him of that part of the Hippocratic Oath that says, "First, do no harm". This guy is a total jerk and you are well rid of him. I think he was just covering for his own incompetence. It would be dangerous for your health if you continued to see him.

I strongly encourage you to report this doctor to the American Medical Association. You need a doc that went in to practice to actually HEAL people, not someone who wants to be a god.

Good luck in your search for a new Rheumy and I'm hoping you feel better soon.

Hugs,

Gail in KY Severson wrote:

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went

nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are

ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need

me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at

least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

Kirk, So glad you are home...""There is no place like home for the holidays..""Thanks for your Christmas card..I would love to have dr Cantor's number and address if you have it . But , please do not over do it..I am ok and can wait until after the holidays to get it..for now rest and recover from your hospital stay..You know those nurses wake you up to give you a sleeping pill..( I know I used to work as a Charge Nurse at night in the Oncology Floor at our local Hospital),,,of course, I never woke anyone up (I think?...) take it easy and thanks for the info. Was he a good Doctor, willing to listen and work with the patients??let me know what was your experience with him and why did you change?..thanks..Love and hugs, Betty

, I have been seeing Dr. Cantor in Lebanon, and he is very thorough, if nothing else. He has dealt with Stills patients before, and currently has me.

Let me know if you want his number, as I can dig it out for you.

Kirk..(finally home from the hospital, yet still have a headache and bo answers!!!)

Got Fired by my Rheumatologist...!..

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went

nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are

ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need

me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at

least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

Betty,

I live near the King of Prussia area about 45 minutes from you. I

have a wonderful Remy who encourges me to be active in my

treatment. His name is Norden in Norristown. If you are

interested please email me at moyer@... and I can give

your all of his information.

Sorry to hear you are have such a difficulte time. Best wished

Judy, Collegeville, PA

Does anyone knows any doctors in PA area..I live in Lancaster

PA..willing to go to D.C. , Philly , Baltimore..?..

> Betty

>

> __________________________________________________

>

December 19, 2004

Hi Betty:

Her is Doctor Biggee's address and telephone number:

Dr. Beth Ann Biggee

Tuft's/New England Medical Center

Washington Street,

Boston, MA

Tel:

Hope this helps and thanks Joe for telling her about the Doc! Take care now and be PAIN FREE! Love Y'all!

WE WILL WIN

Love Y'all

"NEVER FIGHT FAIR"

Carole & Bob

Mom & Dad

Panama City, FL

Please visit the International Stills Disease Foundation Inc. Web Site at

www.stillsdisease.org

Please Make Tax Deductible DONATIONS to the All Volunteer International Stills Disease Foundation Inc.,

1123 S. Kimbrel Ave.

Panama City, FL 32404

There is now a Third Political Party: The "VPA", Veterans Party of America.

Veterans= "Third Class Citizens"

December 19, 2004

Dear ,

I know he only has two stills patients but he is very nice. He is a

very good doctor. He always calls back when I need him. I have been

seeing him almost 2 years. His office is at Einstein hospital in

Philadelphia. His name is Doctor Pappu. His phone numbers are

or .My name is Sharon . If you need

anything else please dont hesitate to ask!! good luck!!

love Sharon

> Sharon : How long have you had this Doctor?..Is he open to your

> questions and truly involve in your care 100%?..Please, send me his

> address and phone number..This might be a good choice for me..thanks a

> bunch...Betty

>

> Sharon wrote:

>

> Dear <

> It sounds like your doctor is having some ego issues that are not your

> fault. I have a doc in philadelphia who is great, maybe he can help!

> If you would like his phone number let me know. You don't need your

> doctor causing this stress for you- you deserve better. I also think

> that some doctors don't like being told by the patient something is

> wrong w/ us. I guess its an ego thing which is not your fault. I had a

> doctor that insisted that I was making things up! Off to the curb he

> went! lol. be kind to yourself and please try someone new. it is

> important to feel a comfortable relationship w/ your doctor.

> love and well wishes!

> shar

>

> > I just cannot believe what happened to me..I went to my

> > rheumatologist yesterday for a check up, I have been really

> declining

> > fast with all the side effects from MXT, embrel and Prednisone. I

> have

> > a GI ulcer, feel dizzy (even though my husband said he has known

> that

> > your years..<01.gif>Funny guy.) feel totally weak and wiped out, my

> > Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am

> > in pain most of the time..So when I went to my apt, I had written

> down

> > some questions for him,,which I thought it was the right thing to

> > do?..He said " " If the MXT makes you sick stop it " " , then he quickly

> > proceeded to barely take my blood pressure and told me that I need

> to

> > see my family doctor , because none of the above were related to the

> > treatment he had prescribed..I said, very nicely...But my family

> > doctor told me on Monday to come and see you...?..When I question

> > about the dizziness w embrel and MXT he went nuts..he said " I am a

> > national expert an I had never heard of such a thing.. " I told him

> > that in our group , some other people had expressed to me that they

> > had the same symptoms and he totally ignored me, then he said maybe

> we

> > need to try cymbalta..and I said, that might not be a bad idea,

> there

> > is a lady in our group that is taking that and find it very

> > helpful..as soon as I said that he just said. " .read more about

> > it...?...???? " then he offered to put me on vicodin 3 times a

> > day..Well, there is a little problem, I am a nurse, and I do home

> care

> > managing, that means I am driving all the time and vicodin and

> driving

> > do not mix...I did not get it...?..anyway, I said the problem is

> that

> > I am down from the pain , my spirits are down, I feel depressed from

> > been in discomfort and pain all the time, and I really do not know

> if

> > the meds are worth the side effects?..at that point, he just about

> > screamed at me and said.. " stop everything and come and see me when

> > you are ready to try again " " I left his office so upset, he even had

> > the nerve to wish me a happy holiday.(.my thoughts were not too kind

> > at point<15.gif>.) He told his receptionist that there was no

> further

> > apt needed...I went to my car and cry...I called my wonderful

> husband

> > at work ..(poor thing he thought I was hurt in an accident ,because

> > of how upset I was.). I feel that none of the doctors that I deal

> > with, really understand.. I am not disrespectful to anyone, but I

> do

> > believe that I have the right to be involve in my medical care and

> ask

> > questions, seek options..is this too much to ask?..After that I felt

> > worse all day, got a headache, my eyes were all red ( my poor

> patients

> > probably were thinking I was getting too much eggnog

> > somewhere<03.gif>). and when I got home , I went straight to

> bed..this

> > is not right I have two boys that need me..they are still little and

> > it is hard for them to understand why Mom get so tired all the

> > time..they call it the " Red Cheeks Disease " <01.gif>..But anyway..I

> do

> > not know what next..I still have some embrel to get me throught the

> > holidays and ultracet for everyday ..but I think that I need to find

> > someone who will not have such a great ego that is willing to talk

> > with me..Sorry for venting so much..this has been one of the most

> > upsetting experience since I was diagnosed. Does anyone knows any

> > doctors in PA area..I live in Lancaster PA..willing to go to D.C. ,

> > Philly , Baltimore..?..if you know of anyone let me know..I saw a

> name

> > of a doctor in PA in the list of MD that was giving to me when I

> first

> > joined, I might try him..Mark Lopatin?..does anyone know him..Funny

> my

> > EX rhumatologist name is not in the list even though, he said he is

> a

> > national expert?..Oh, well enough..I need to be kind around the

> > holiday times at least...thanks for listening and reading.. I am

> > sorry about my spelling, typing and grammar..I am not an American by

> > birth and English in my second language...take care.. Peace and love

> > to all.

> > Betty

> >

> > __________________________________________________

> >

December 19, 2004

, Dr Kantor is a physician in the L.I.M.A. group (Lebanon Internal Medicine Group). He was highly recommended to me by Dr. Medsger, who Dr. Cush had recommended. Dr. Medsger is nearing retirement and is no longer accepting new patients.

His main office is in Lebanon @ 755 Norman Drive, Lebanon, Pa 17042-3074. The phone number is . He also has an office in Manheim. I do know you are not very far from there as Lancaster is about 25-30 miles if my memory servers me correctly.

I hold this man in high regards. He is straight forward and honest. My office visits have lasted no less than two hours to date, but I am still pretty new to this.

If I tried to compare this man to my last RD, I would have a hard time speaking kindly of my last RD at all.

Dr. Kantor has dealt with 5 Stills patients before me, so I assume that to be a relatively large number considering the rarity of this "living hell" we have labeled "Stills"!

Let me know if you do contact him. Feel free to use my name if you choose to do so.

Best of luck, Kirk, "The man of the living dead", or at least that is how I feel!

Adios.

Got Fired by my Rheumatologist...!..

I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went nuts..he said " I am a national expert an I had never heard of such a thing.." I told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are ready to try again"" I left his office so upset, he even had the nerve to wish me a happy holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.

Betty

__________________________________________________

December 19, 2004

Small world Betty. Dr. Kantor told me about a Stills patient he had a while back that had moved out west. I assume that to be you.

I have been seeing him since September and like him a lot. I unfortunately had to miss my appointment on Friday as I was in the hospital, but will be in touch with him shortly to reschedule.

He seems to be a great Dr, and is very thorough and seems to listen very well. He seems genuinely concerned.

Kirk.

Got Fired by my Rheumatologist...!..> > I just cannot believe what happened to me..I went to my rheumatologist yesterday for a check up, I have been really declining fast with all the side effects from MXT, embrel and Prednisone. I have a GI ulcer, feel dizzy (even though my husband said he has known that your years..Funny guy.) feel totally weak and wiped out, my Hematocrit, Hemoglobin are dropping, my sed rate is raising and I am in pain most of the time..So when I went to my apt, I had written down some questions for him,,which I thought it was the right thing to do?..He said ""If the MXT makes you sick stop it"", then he quickly proceeded to barely take my blood pressure and told me that I need to see my family doctor , because none of the above were related to the treatment he had prescribed..I said, very nicely...But my family doctor told me on Monday to come and see you...?..When I question about the dizziness w embrel and MXT he went nuts..he said " I am a national expert an I had never heard of such a thing.." I> told him that in our group , some other people had expressed to me that they had the same symptoms and he totally ignored me, then he said maybe we need to try cymbalta..and I said, that might not be a bad idea, there is a lady in our group that is taking that and find it very helpful..as soon as I said that he just said.".read more about it...?...????" then he offered to put me on vicodin 3 times a day..Well, there is a little problem, I am a nurse, and I do home care managing, that means I am driving all the time and vicodin and driving do not mix...I did not get it...?..anyway, I said the problem is that I am down from the pain , my spirits are down, I feel depressed from been in discomfort and pain all the time, and I really do not know if the meds are worth the side effects?..at that point, he just about screamed at me and said.."stop everything and come and see me when you are ready to try again"" I left his office so upset, he even had the nerve to wish me a happy> holiday.(.my thoughts were not too kind at point.) He told his receptionist that there was no further apt needed...I went to my car and cry...I called my wonderful husband at work ..(poor thing he thought I was hurt in an accident ,because of how upset I was.). I feel that none of the doctors that I deal with, really understand.. I am not disrespectful to anyone, but I do believe that I have the right to be involve in my medical care and ask questions, seek options..is this too much to ask?..After that I felt worse all day, got a headache, my eyes were all red ( my poor patients probably were thinking I was getting too much eggnog somewhere). and when I got home , I went straight to bed..this is not right I have two boys that need me..they are still little and it is hard for them to understand why Mom get so tired all the time..they call it the "Red Cheeks Disease"..But anyway..I do not know what next..I still have some embrel to get me throught the holidays and ultracet for> everyday ..but I think that I need to find someone who will not have such a great ego that is willing to talk with me..Sorry for venting so much..this has been one of the most upsetting experience since I was diagnosed. Does anyone knows any doctors in PA area..I live in Lancaster PA..willing to go to D.C. , Philly , Baltimore..?..if you know of anyone let me know..I saw a name of a doctor in PA in the list of MD that was giving to me when I first joined, I might try him..Mark Lopatin?..does anyone know him..Funny my EX rhumatologist name is not in the list even though, he said he is a national expert?..Oh, well enough..I need to be kind around the holiday times at least...thanks for listening and reading.. I am sorry about my spelling, typing and grammar..I am not an American by birth and English in my second language...take care.. Peace and love to all.> Betty> > > > __________________________________________________>

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