rheumy appt

[Guest guest]

Melt,

Thank you ever so much for writing back, I have felt so all alone today. I am

ahead of you on the chocolate though, I sent my hubby out about an hour ago

to buy me some Herseys Kisses..and 25 later, I feel ok...I have heard so much

about Dr. Cush in Texas, even if he can't see me, I'd like to have someone

experienced to look at my case, charts and daily journals. I am so happy and

proud to be a part of this family, everyone is so nice and comforting.

Thanks again for being here.

Sincerely,

Lorie In Seattle

[Guest guest]

Hi Judy,

Thank you for writing back. I am sorry to hear that you are in the same

boat, I guess that we are not alone though. It just seems that way sometimes.

I do go see my GP on Thursday and hopefully we can tackle some of these

symptoms one at a time. I have to wait until next week to make an appt at the

University. They need all my info before they will make an appointment...I

can forsee more problems in my future with the doctors here, so that is why I

am on the hunt for a specialist anywhere in the US that is taking on new

patients, or at least review my case, charts, lab work, etc..thanks again for

listening.

Lorie in Seattle

[Guest guest]

Hi Lorie,

Weeeelllllllll......I think going before the Rheumatology board would be a

smart thing. Out of ten doctors, someone must be familiar with Stills. If

not, why don't you get a referral to the Mayo Clinic. I went through MANY

doctors before Mayo was finally able to diagnose me correctly. I flew there

with my husband from California and it was the best trip I ever made. I was

sick as a dog but they diagnose me quickly and that was the start of new

treatments and help. I don't know what your finances are but I think it was

Caroline that said there was a foundation called " Angels Flight " or something

like that. They will fly you for free there if you lack the funds. I sure

would look into it.

Chin up and try to relax a little. It's so hard to not feel good............

(

xxoo

Ca. Carmen

[Guest guest]

Oh dear Lorie, there is Dr. Cush in Texas, I don't know if he is seeing new

patients but there are members that can find out. I'm sick to think of you

spending the day crying but do understand that you feel you just cannot tell

another soul. Get some chocolate as my sister Traci says, sit down and eat

it with us knowing that we are here and with you in spirit. And get a

snuggie and curl up and watch cartoons, you know those old good ones? We

are with you dear. Much love today, Silly Melt

> Hello Still's Friends,

> I am so upset today, that I could just crawl in a whole and forget

> all about life. .I don't want to go

> through another flare just like I had been through. Oh geeze, yet

> another doctor to explain all this too. I feel like a broken record.

> I am to the point where I am willing to fly anywhere in the US to a

> doctor who has experience in Stills.

[Guest guest]

Dear Lorie

I can relate to your feeling of sadness. I week ago I had the

same conversation with my Rheumy. I cried for the whole day. Do get

something for the pain. There is no reason to suffer just because

these dr's can't commit to a diagnosis. My prays are with you. Keep

us posted.

Judy, Collegeville, PA.

> Hello Still's Friends,

> I am so upset today, that I could just crawl in a whole and

forget

> all about life. I went and saw my Rheumy today and she basically

said

> that she doesn't know enough about Stills to do a 100%

diagnosis...so

>

[Guest guest]

Dear Lorie,

There are three doctor's at the Mayo CLinic in Rochester Minnesota

who " take a special interest in Stills Disease. " They are

Dr. Michet (sorry don't have his first name.)

Dr. Mason

Dr. Mazlumzadeh (don't have his first name either)

The phone number to make an appointment is:

507-284-4550

((((((((((((((((((((((((a hug for Lorie)))))))))))))))))))))))))

tricia

Wisconsin

*****************************************************************************

*********************

-- rheumy appt

Hello Still's Friends,

I am so upset today, that I could just crawl in a whole and forget

all about life. I went and saw my Rheumy today and she basically said

that she doesn't know enough about Stills to do a 100% diagnosis...so

she is wanting me to go to the University of Washington before the

Rhematology Board, of 10 doctors to have them look at my case. She

saw the temp. graphs that i have been keeping for 2 months, she has

pictures of the rash that has been on my back, feet and face. She

thinks maybe this is an allergy thing going on...OMG...come on here,

I have never heard of an allergy that causes fever spikes of 102+,

and the pain from heck, and all the other Stills symptoms, for over 7

months, I maybe wrong here, so please correct me. So needless to

say, I am going to take her advice and go to the UofW and see what

they can find. I just can't stop crying today, I was hoping that we

could start some treatment and be on with it..I don't want to go

through another flare just like I had been through. She won't even

take care of my pain management, she said to go see my regular doctor

for pain meds, reflux meds, depression meds..etc..Oh geeze, yet

another doctor to explain all this too. I feel like a broken record.

I am to the point where I am willing to fly anywhere in the US to a

doctor who has experience in Stills. I really need some definate

answers and treatment of some sort. At the rate I am going I don't

think that I will live to see 50. Sorry for all the gloom today, but

its a bad day here. Thanks for listening, yet again..Hope all is well

with everyone else. Have a great and painfree day.

Lorie In Seattle

..

[Guest guest]

Dear Lorie,

There are three doctor's at the Mayo CLinic in Rochester Minnesota

who " take a special interest in Stills Disease. " They are

Dr. Michet (sorry don't have his first name.)

Dr. Mason

Dr. Mazlumzadeh (don't have his first name either)

The phone number to make an appointment is:

507-284-4550

((((((((((((((((((((((((a hug for Lorie)))))))))))))))))))))))))

tricia

Wisconsin

*****************************************************************************

*********************

-- rheumy appt

Hello Still's Friends,

I am so upset today, that I could just crawl in a whole and forget

all about life. I went and saw my Rheumy today and she basically said

that she doesn't know enough about Stills to do a 100% diagnosis...so

she is wanting me to go to the University of Washington before the

Rhematology Board, of 10 doctors to have them look at my case. She

saw the temp. graphs that i have been keeping for 2 months, she has

pictures of the rash that has been on my back, feet and face. She

thinks maybe this is an allergy thing going on...OMG...come on here,

I have never heard of an allergy that causes fever spikes of 102+,

and the pain from heck, and all the other Stills symptoms, for over 7

months, I maybe wrong here, so please correct me. So needless to

say, I am going to take her advice and go to the UofW and see what

they can find. I just can't stop crying today, I was hoping that we

could start some treatment and be on with it..I don't want to go

through another flare just like I had been through. She won't even

take care of my pain management, she said to go see my regular doctor

for pain meds, reflux meds, depression meds..etc..Oh geeze, yet

another doctor to explain all this too. I feel like a broken record.

I am to the point where I am willing to fly anywhere in the US to a

doctor who has experience in Stills. I really need some definate

answers and treatment of some sort. At the rate I am going I don't

think that I will live to see 50. Sorry for all the gloom today, but

its a bad day here. Thanks for listening, yet again..Hope all is well

with everyone else. Have a great and painfree day.

Lorie In Seattle

..

[Guest guest]

Oh Lorie,

you have been going through this for so long friend, and we all feel

terribly. I hate to see you like this and be so down and you have all the

right in the world to be frustrated. I wish that there was something that

I could do for you, but I am here...all of us are here friend...and vent to

us all you want. My heart breaks for you, and I know how you feel....truly

I do. If possible, please see if you can see Dr. Cush in Texas or go with

one of Tricia's suggestions at the Mayo Clinic. At least they know about

Stills Lorie. God..my rheumy drives me crazy sometimes, but when it comes

down to it...he knows what he is talking about and has my best interest at

heart. He knows a lot about Stills and so does UCONN University where I go.

All 8 doctors are very aware of Stills and they are all involved in my case

You could even come out here Lorie and stay with me and get an

appointment. Anything that you need friend...if I can help. Please call on

me if you think that this is a good idea. At least it's a hospital where

Stills is known about. I am sending you a lot of hugs from across the

United States tonight friend. (((((( Lorie ))))) Love, Sue #2 from

Connecticut

-- rheumy appt

Hello Still's Friends,

I am so upset today, that I could just crawl in a whole and forget

all about life. I went and saw my Rheumy today and she basically said

that she doesn't know enough about Stills to do a 100% diagnosis...so

she is wanting me to go to the University of Washington before the

Rhematology Board, of 10 doctors to have them look at my case. She

saw the temp. graphs that i have been keeping for 2 months, she has

pictures of the rash that has been on my back, feet and face. She

thinks maybe this is an allergy thing going on...OMG...come on here,

I have never heard of an allergy that causes fever spikes of 102+,

and the pain from heck, and all the other Stills symptoms, for over 7

months, I maybe wrong here, so please correct me. So needless to

say, I am going to take her advice and go to the UofW and see what

they can find. I just can't stop crying today, I was hoping that we

could start some treatment and be on with it..I don't want to go

through another flare just like I had been through. She won't even

take care of my pain management, she said to go see my regular doctor

for pain meds, reflux meds, depression meds..etc..Oh geeze, yet

another doctor to explain all this too. I feel like a broken record.

I am to the point where I am willing to fly anywhere in the US to a

doctor who has experience in Stills. I really need some definate

answers and treatment of some sort. At the rate I am going I don't

think that I will live to see 50. Sorry for all the gloom today, but

its a bad day here. Thanks for listening, yet again..Hope all is well

with everyone else. Have a great and painfree day.

Lorie In Seattle

...

[Guest guest]

Lorie, I wish I could come over and we could get silly, laugh a little,

and have some tea. Some days in persons life with Stills are like this

and it is nasty! We are thinking of you and praying for you. The trip

to the university sounds like it might be a very good option, I hope you

do that, Louise.

Lorie wrote:

> Hello Still's Friends,

> I am so upset today, that I could just crawl in a whole and forget

> all about life. I went and saw my Rheumy today and she basically said

> that she doesn't know enough about Stills to do a 100% diagnosis...so

> she is wanting me to go to the University of Washington before the

> Rhematology Board, of 10 doctors to have them look at my case. She

> saw the temp. graphs that i have been keeping for 2 months, she has

> pictures of the rash that has been on my back, feet and face. She

> thinks maybe this is an allergy thing going on...OMG...come on here,

> I have never heard of an allergy that causes fever spikes of 102+,

> and the pain from heck, and all the other Stills symptoms, for over 7

> months, I maybe wrong here, so please correct me. So needless to

> say, I am going to take her advice and go to the UofW and see what

> they can find. I just can't stop crying today, I was hoping that we

> could start some treatment and be on with it..I don't want to go

> through another flare just like I had been through. She won't even

> take care of my pain management, she said to go see my regular doctor

> for pain meds, reflux meds, depression meds..etc..Oh geeze, yet

> another doctor to explain all this too. I feel like a broken record.

> I am to the point where I am willing to fly anywhere in the US to a

> doctor who has experience in Stills. I really need some definate

> answers and treatment of some sort. At the rate I am going I don't

> think that I will live to see 50. Sorry for all the gloom today, but

> its a bad day here. Thanks for listening, yet again..Hope all is well

> with everyone else. Have a great and painfree day.

>

> Lorie In Seattle

>

[Guest guest]

Dear Lorie,

It's Dave. Their is a Rheumy who specializes in ''STILLS'' That I use he's a

regular Rheumatologist he specializes in hard to diagnose Autoimmune Diseases

and He also specializes in Exotic Rheumatic diseases. He is in South florida

He is absolutley FANTASTIC!!!! He's really a Great guy and very intelligent

and bright physician. His name is Dr. Barry Waters, M.D., in Coral Springs

fla. It took me a year to finally be diagnosed. he was the one who diagnosed

me. I went from Doctor to doctor and no one knew what was wrong with me. I

had surgery, scaned from head to toe!!!! Every inch of my body was cut and

scaned and scoped. And he's the one who Diagnosed me. Please E-mail me

direct and we can talk I really dont mind at all I would like to help anybody

especially all my stills friends. My E-amil address is wave678@....

Please E-mail me. I would love to help you!! and anybody else. Take care and

try to think positive and I hope your some what pain free!!!!! Sincerely your

friend , Dave.

[Guest guest]

Well we made the trip to Kansas City and back again and had a good report from

both the rheumy and opth. Our first appt was with the opthamologist and

Jaye did better with the field vision test then she has ever done. She has no

inflamation in her eyes and all looks good in that area. She will have to get

glasses now though. We had talked many times that she really wanted to have good

eyesight like her father. But my eye sight is so bad that her chances of having

good eye sight really was not very good. So we will try to find a time within

the next couple of weeks to find frames that she likes and get them ordered.

When we went to the rheumy we had a good visit there also. The only negative

part of that appointment was a comment he made about her meds. As he was

looking over her list of med's, she is on 8 now, he just shook his head and

commented that she sure is on alot of meds. I have had that thought so many

times and wonder am I too aggressive or over medicating her but then everything

seems to be right along the lines that when we decrease she has problems. One

other good thing is that we have started the taper of her prednisone, YEA! So in

four weeks she will not be on it anymore. They drew labs again and since we saw

the neurologist just the week before I waited to have all the labs drawn at once

so that nothing needed to be duplicated. We had a CBC, BMP, Liver function,

Keppra level, Vitamine D level and not sure what all else they looked for. But

both doctors wanted basically all the same labs with just the neuro needing the

keppra level. Anyway I figured one stick for Jaye was better then two.

And these doctors are good to share all their information. We will have to see

where her vit D level is at and might have to restart that. But one thing at a

time. Her joints look good and the swelling in her angles and feet were much

better then six weeks ago. We do not have to go back for two months this time.

We have made three trips in the last ten weeks. This time we were not able to

stay the night and so the travel up both appointments a quick trip to the mall

for Jaye to get her smoothie and the ride home wore her out. She was so

exhausted that she was not able to get to sleep until 3:30 or 4 a.m. after we

got home. She was so exhausted that she was near tears several times. Needless

to say she missed school on Thursday because once she got to sleep she was not

able to get up for school. UGGGH. But today she was feeling good and back at

school. She is tired but still functioning. So, we have determined that mtx is

a good thing for Jaye. The rheumy was impressed and Jaye loves how

she feels most of the time.

Veri & Jaye 15 poly