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

[Guest guest]

Hello Joe P.

I use the initial for your last name because we have two or three Joes

now. It is good to finally see you post. I heard from Bob that you all

finally met up at the conference and had a good talk. It is interesting

that your daughter is having some positive results with herbs and her

advice from an herbalist. We have a few other folks who are using

similar products with good results also, particularly Caroline from

Washington.

Were you able to follow my email suggestions I sent to you last fall

when I was trying to get information to you about the conference? The

two email addresses you were using caused the mix up in information I

tried to send and I did not realize what had happened until the

conference began. I am so glad you were able to have some contact with

The Stilligans, I felt very badly about the mix up and never heard back

if we solved the problem. I have a new computer now but in the process

of hooking it up and getting a new Internet provider I lost my email

address book so I can't remember if this is a new address or not,

doesn't really matter, I don't have anything to mix it up with, lol.

I am glad you were able to contact us and give us the name of such a

good doc!! I know that will be a help to more than one person, thank

you! What did your daughter think of the brochure about Stills

Disease? Again, it is good to hear from you and get to know you, Louise.

ph wrote:

>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.

>

>

[Guest guest]

> Hi Kirk

That must have been me Dr. Kantor was referring to. I wrote to Betty and

suggested she try to hook up with him. He correctly diagnosed and began

treating me in 1991 and it was a life saver. He's a very compassionate doctor.

I then moved to Phoenix AZ and he referred me to another super rheumatologist

out here by the name of . Please tell him Patty Hackman, AOSD

patient ( " who moved out west " ) says hello and that I am doing very well on

methotrexate now. He is awesome and should be a blessing for you as well. Does

he have an email address at his practice?

Good luck!

Patty H.

>

> Date: 2004/12/19 Sun PM 10:30:20 EST

> To: <Stillsdisease >

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

>

> 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

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

I don't know about an email address, but I will print this letter & give it to him at my next appointment.

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> > > > > > > > __________________________________________________> >