New reumy think it's not Sjogren and not RA.

[Gonzo]

In April, the internist said he is convinced that I have Sjogren's. Now I am today for the first time a rheumatologist and she has really doubts. She only will be my doctor if I will do a lipbiopt. And if the lipbiopt is negative or doubtful she sent me back to the general practitioner. In the study she did, my joints really hurt, but because they are not swollen it can't be RA (well thats nice). Just to be sure she sent me for x-rays of my hands and feet. Inthree weeks I get the results and I have to tell her if I want to do the lipbiopt.
It feels like I'm back at square 1. Shoud I do the lipbiopt? The only thing she can do if the lipbiopt is positive, is set me on plaquenil. Se will not do that if I don't do the lipbiopt. She had also really bad bedside manners, the way she talked to me was if I/m a four year old... So she sais: I belive you if you say you have pain, but we can not do anything about it. Well, I talked and talked and I got a presription for different painkillers. Diclofenac is not working, and she gave me Arcoxia (etoricoxib). I hope that will do something. Anyone experience with that?

And I know, first waiting for the testresults and then the next step. But I am afraid I'm getting in a position were a lot of people get into. That docters don't take it seriously and that the only thing you can do is accept that you have pain and are extremely tired and that's it... I am still crying since I got home from the hospital.

[anita]

Hi Gonzo,

You have a couple choices.  Since the rheumy wasn't very nice and/or compassionate, you could get another opinion with another rheumy.   I'm guessing your blood work was normal as for why the doctor insists on the lip biopsy.  This may be something you should consider if you will not get treatment without it being positive.  Yes, some people have had problems with numb areas and small knots (I have both) but I didn't think it was that bad and I was like you and needed it done to prove my diagnosis and receive treatment.

As for the Arcoxia.  I don't know much about it, but online it says it's for joint pain, so hopefully it will help you.

[Jellyb]

Hi Gonzo,
I am sorry you had such a bad experience with that rheumatologist.

My labs have all been negative, as was my lip biopsy. It was my eye doctor that pushed my diagnosis.  Do you have a good I eye doctor that could get in on it? And then get a different rheumy. My lip biopsy was negative and I had to wait another three years for a diagnosis.

[Patze]

Hi Gonzo,

Wow, I too am sorry to hear that you had a bad experience with your rheumy.  And unfortunately some doctors just won't do anything without positive test results, and whether you're symptomatic or not doesn't seem to matter much (had a GP like that, and it got ugly before I finally fired her).

Can you go for a second opinion?  Maybe a teaching facility or a major medical center if you're close enough (they often have some cutting edge doctors associated with them)?

I won't bore you with my lip biopsy story as you'll find mine and a ton more by using the search engine located in the upper right hand side of this page.

Hang in there and I'll keep the fingers crossed that you'll get some answers soon -

Patze

[gold55]

Sorry about your bad experience and your pain Gonzo!
I hope they can get to the bottom of your issues.

Jellyb....I have positive ANA and SSA for Sjogrens but no other positive markers and I don't present with the typical dry eyes and mouth (only occassional) but I do have big toe joint and finger osteo issues.  I don't know whether to begin treatment now or wait until I have more joint and fatigue problems??  Someone else on the forum said you can have the blood markers but the disease may not be active at the moment?  I didn't think sjogrens went into remission?  Can anyone comment on this?  I don't want the disease to further destroy joints or glands but at the same time I really don't want to start drugs with side effects when I'm not feeling that bad.