Re: Need a good rheum.--can you ever trust a Dr.?

[Guest guest]

Sorry to read about all the sh... you have been going through. Maybe someone in

your area can recommend a good rheumy.

Q.?

Why are doctors the worst patients?

A:

Because they don't take for their colleagues, the crap they have been dishing

out to their patients.

louwheres <louwheres@...> wrote:

Negative heading I know. I have been Dx for 2 1/2 years now ; and

as of Wed. have seen 3 rheumatologists. The first one was nice; but

seemed burned out and bored. He never prescribed anti-depressants or

anything for pain other than NSAIDS. My first visit was about 1/2

hour; after that it was 15 min, tops. All he did was say what Rx's do

you need and start writing. After a whole year of this I decided to "

travel " ( 65 miles one way) to try to find a " good' one. The new one

was a well known researcher and publisher of excellent articles---

very intelligent and knowledgable about the newist drugs. He should

stick to research. He never had a clue about me( even after a year),

never looked at my chart---just made sure I filled out his research

questionaire each visit. I had a bad reaction to Enbrel---he said I

could never take biologics again. Next visit he wrote me a script for

Enbrel. I had an MRI in Dec. which showed extensive damage in my

cervical spine---with pain radiating down my left arm. He and my PCP

said it was RA damage with a little OA thrown in . He suggested I go

on Orencia--he had just finished a 2 year study on it. I asked about

the infection risk; since that is why I can't take Enbrel. He got

angry, and said if you don't want to help yourself and you are afraid

of everything; how can I help you?? On to a recommended new rheumy

for an opinion of what to do next. I liked his approach and interest

very much; but when I asked what he thought about my MRI--he said

forget about it--it's OA, nothing to do about that. I said I felt it

was RA and indicated uncontrolled disease as it had progressed so

much. He said " " RA never affects anything but C1 & C2---ever! "

This isn't true. I've just read at least 20 articles about cervical

spine RA---most dangerous in C1,C2; but can be anywhere C1-C7. So how

can I trust a rheumatologist who is wrong about basic facts?? I have

exhausted the area rheumy supply. What the he** do you do?? I have

never posted anything this long and thank you if you are still with

me. I am so frustrated and disappointed. I really don't know where

to turn. Any suggestions appreciated! Lou

[Guest guest]

Lou,

I really don't have many suggestions but wanted to reply because I am

frustrated also and sometimes feel the condition has been allowed to

progress by lack of competence or for whatever reason. I have seen 6

rheumatologists in 10+ years, 2 of them not sure if they are licensed

rheumys or not, I know they list themselves as internists who treat

RA. I was never told about folic acid until recently by the

assistant. I have to ask them for meds like that and anti-nausea

pills but yet they have been quick to prescribe MTX and acted shocked

when I told them about the side effects from it. I get the

impression they don't check for drug interactions by the things they

prescribe and a lot of the times the patient wouldn't know to ask for

folic acid to go along with the MTX. I could go on and on but just a

example to let you know you have company with the lack of care or

burned out or lack of interest or whatever their reason might be.

Those who have been fortunate to find good ones have a whole new

perspective on the condition. Those of us who have not been lucky to

find good ones feel like we have to become our own doctors and feel

neglected. But never give up searching for the right doctor with the

right therapy for you. I am considering moving hundreds of miles to

be near a good rheumatologist. It isn't like the other specialties,

they aren't paid extra for studying this specialty so they have to

really have a true desire to help those with autoimmune disorders of

all kinds.

I am shocked at the researcher you saw and thought researchers would

make better rheumatologists for some reason. I guess I was wrong

about that one. Still looking for one who has the whole package, who

can treat me without killing me at the same time or causing another

chronic condition to deal with daily because he didn't prescribe the

right meds in the right doses for the individual. There is no such

thing as one therapy fits all. A lot of the times it is said RA

causes the other conditions, yet it is often the drugs used to treat

the RA that really causes the condtions for example prednisone can

cause 'too many conditions to name' and only offer temporary relief

of RA.

Keep switching rhematologists until you find one you are comfortable

with. They have to be interested in getting you better or at least

make you feel like they are. ha!

take care,

Ebony