How Often Has a Doctor Said This to You????

[colleen]

Barrie , you hit the nail on the head . I have been to four Rheumy's and each one is as you have described ...very very frustrating

[eyeamdry]

Oh, I feel lucky to have my wonderful rheumy and to have found her through this forum from another member, makes it even better.  I had one of the jerks when I first went for dx. They said there was nothing wrong.  Two weeks later U of M had my blood with positive proof.  Hang in there you guys.

[Carolina]

Dear Waldop and all:

Sigh, so many doctors know nothing about Sjogren's, even Rheumatologists.

I have found articles about Sjogren's that are written by respected professionals, including researchers.   With data and technical results.   These articles cite the various co-conditions that can accompany a diagnosis of Sjogren's, and detail the mechanisms at work.   

i used to copy them and take them to these doctors, including Orthopedists, Internists, and Neurologists.   I've also mailed them to doctors

The irony is that I never EVER test positive for any auto immune condition, tho I have SICCA and PN and Interstitial cystitis among other conditions.

So I no longer use the word Sjogren's with my physicians, so the question no longer arises.

i guess that' easier anyway!!

Keep us posted.

hugs

Elaine

[susan]

It is just this issue that led me to leaving my internist of 15 years! He just didn't grasp the impact of Sjogrens.
New internist gets it, and has made appropriate referrals to specialists as needed. Not a hand-holder, but has a compassionate way about him.
Sometimes it is worth going to the trouble of changing doctors.

[Pisces24]

Is there a teaching/research hospital anywhere near you?   I recommend that place as that is where I FINALLY got diagnosed with Sjogrens after a 6 year journey. Thankfully mine is only a 35 mile drive.

BTW: I heard everthings from my previous (so called specialists) to 1) sure it is come kind of cancer but you are not sick enough TO 2) probably the cat's fault cause you got something from him (I didn't have a cat when it started.) 

[One and only]

This is a very very sore subject for me!  I know I've mentioned this before, but I former GP was basically treating me as if I had a Somatization disorder despite the fact that I was already diagnosed with AI Pancreatitis, Hashimoto's, and all my other docs were convinced I had some underlying AI disease but just weren't sure which at that point.  So when my pancreatitis flared up to the point I couldn't keep food down for 2 weeks and hadn't keep fluids down in 48 hours I ended up being admitted through the ER.  My mom called her so she would be in the loop and she basically yelled at my mom for taking me to the hospital in the first place and said that I need to learn how to deal with my "health issues" at home.  I ended up in the hospital for 6 weeks with not only AI Pancreatitis but AI Hepatitis and a bunch of other complications and thats when I finally got my Sjogren's diagnosis.

I also fired my doctor at the time.  Obviously.

This happened in September, but I'm still so so angry about it.  I want to sue her or write her a letter or file a complaint about her but I just don't have the energy right now.  I don't know if there would be any point of suing her because I didn't listen to her advice and stay home from the hospital, so I couldn't really claim damages.  I really just want an apology and for her to admit that she was totally wrong.

Anyway... I say I wouldn't wish this disease on anyone but... I think I might actually have to agree with Pooh.  Let the punishment fit the crime. 

I was told too that I basically had a Somotoform disoreder also,, ok,, that caused the dry mouth dry eyes,, chronic infections,, sensory neuropathy,, ya,, were vrazy,, dont think your ever going to get a apology from any of the white coats that have there prestigious name sewed on it,, rememebr they went to school,, but also remember,, the ones that graduated at the bottom of teh class are still called doctors,, thre the ones that practice in the rural countryside,, they never could make it in teh major hospitals,, idiots,, and unlike you,, I wish they all would get a good taste of this disease and watch them whine and cry,,

[Kerrikins]

Isn't there away to file a complaint on these doctors? It is blatant misinformation and incompetence to state that sjs only affects the eyes and mouth! Any rheumatologist should know that joint pain and systemic involvement can be major issues. any rheum that doesn't know this shouldn't be one! After hearing about so many bad experiences I feel so blessed to have a rheum that is knowledgeable about sjs!

As for the poster who was hospitalized, I really would do something about that when you are up to it. You could have died if you had followed that doctor's advice and stayed home!

[One and only]

You probably could file a complaint,, or a lawsuit for that matter,, but I dont think it would go anywhere,, they hide behind there walls , they show what they found, not what they  didnt find, best you can hope for is that they or one of there family members get something like this,, call it sweet vengence,

[colleen]

Can anyone in arizona reccomend a good Rheumatologist.

Thank you

[Nathan]

Can anyone in arizona reccomend a good Rheumatologist.

Thank you

If you're in the valley, I highly suggest AARA - Arizona Arthritis & Rheumatology Associates. I had amazing luck finding a doctor who was actually knowledgable and treated me despite the borderline bloodwork. They're a pretty serious group.