Doctor said no to Sjogrens

[KJ]

I do feel better about having an answer, even if it is an "undiagnosis".  The internal medicine doctor that I saw today said that they do not want to label me with sjogrens because my inflammation marker was one of the lowest he has ever seen.  I am ana pos (ssb), but all other blood work has been normal.  He said that the dry eyes and mouth happen to people all the time, and may be a coincidence.  I am already on meds to treat those two symptoms, and even if they were to label it ss there is nothing more that they would give me.

He said that he does not want to say that I do not have it, just that I don't meet the criteria to label it.  He also said that I could be at the beginning of an auto immune disease, or I may not have anything in the future (wow, rocket science). 

I am just worn out, but glad to not have any more appointments.  Anyone else have this issue of no inflammation?  It really just does not make sense.

Thanks for your help.  Kellie

[Patze]

Hi Kellie,

I'm sorry that the doctor has kind of shut the door a bit, but he's still treating your symptoms so that is always a plus in my book!  

I'm sorry but I can't remember, have you seen a rheumy yet?  If not, will the doctor refer you to one by chance?  Or can you see one without a referral?

I often have inflammation, and an ESR that goes moderately up and down without an answer as of yet.  I'm hoping that my blood work will one day go positive, and I'll have some answers (keeping my fingers crossed big time!).

Hang in there, and keep us updated on how you're doing, okay?

Take care -

Patze

[jonnell]

Kellie, Jenna had no inflamation marker and they labeled her as sjs, she had positive ssa and ssb test and positive ana everything else was negative,  I would definetly see a rhumy for a second opion.    Hugs and Kissess   Jonnell and Jenna

[dbab]

Kellie,

That is strange.  My inflammation markers are not always high.  In fact last time, mine was 12 but usually it's in the 30s or 40s.  I would assume this happens with a lot of people.  If you have symptoms and a postive SSB test than I would have to agree with Patze and Jonell and maybe see another doc for a second opinion.

[kathyl]

I never have inflammation but I had a positive ANA and positive SSB.  I was diagnosed with primary SJS and the doctor explained that if I had a lot of inflammation then I would have lupus but did not give me that diagnosis.  This diagnosis was made by a Rheumatologist.  I had no active signs of lupus but with the positive blood tests and all the symptoms, like pleurisy and neuropathy that meant I had primary SJS.  I have been on plaquenil for three years and it has helped.  So do prednisone bursts.  I agree with the other answers and would see another doctor.
KL

[KJ]

Thanks for the advice.  I am moving from Alaska to California in a month, and I may try for a second opinion then.  I am not sure that it would change anything one way or another.  Like I said, I am on Restasis for my eyes, and Saligen for my mouth.  If I have another flare up, then I would certainly see a rheumatologist even if it meant paying out of pocket.  Do any of you think that it would benefit me to see a rheumatologist now vs. later?  If I don't need to fight the military health system right now, then I really don't want too as the thought of it makes me nauseous.

Thanks again for your posts.

[fluffiebunnie]

The doctors interpretation of blood tests confuse me... my doctor has always said my blood test is negative for SS, but he says I have inflammation in my blood tests....    I dont understand how they work it out...

I would get a second opinion if you can.  I have to rely on the good old NHS which is rather rubbish in my opinion, so dont think I can see anybody else other than the doctor given to me.

[ohiolady]

Kellie,

I have perfect blood work with no antibodies for Sjogrens, no inflammation, just perfect.  I have severe dry eyes, mouth and nasal passages though, with treatment, have improved considerably.  In the beginning, no one wanted to diagnose me with Sjogrens because of my bloodwork.  It was found that I had antibodies for Hashimotos and that changed the whole picture for my rheumy.  It is her opinion that antibodies don't always show if Sjogrens is secondary to another autoimmune illness.  I did not want a lip biopsy because I've read of some negative after affects and I did not need that to deal with.

It is very frustrating when you are very sick and need some answers and no one wants to diagnose you.  But, I've improved with my symptoms and my treatment is to manage the dryness and reflux.  I rest as much as possible and avoid stress if I can. 

I think it would be safe to wait until you get established in California to find a rheumatologist.  In the end, we just manage our symptoms and it seems you have the appropriate meds to do that.  There really is no magic bullet with or wtihout a diagnosis.

As I mentioned, I feel much much better than in the beginning and I'm hoping you will too.

Anna

[Scottietottie]

Hi Fluffie

You can ask your GP for a second opinion if you want one. Like a referral to another specialist if the one you are seeing uis not making sense. You could also see somebody privately, which would be quicker but would obviously cost.

Take care - Scottie

[Epson]

Kelly,

I think you might want to get a second opinion, this doesn't seem to make any sense, but I'm not a doctor either.

[Wynter]

Kelly,

I am in a similiar situation. I've had the dry eyes/mouth for a few years, but it wasn't that bad. Then, last year, my sypmtoms became much worse. I have seen 3 rheumies, most recently last week at Cleveland Clinic (top 4 hospital in US) and they rheumy told me that he can only diagnose with fibromylagia. All my bloodword is completely normal and the lip biopsy I had in July 08 is normal, even after two readings. I could request another lip biopsy, but don't want to go through it again. The rheumy in Cleveland said that my glands should eventually start working again. That doesn't make much sense to me if they have been malfunctioning over 5 years. Anyway, good luck to you. Alot of us are in the same boat!

[Patze]

Hi Wynter,

You mentioned that the doctor at the Cleveland Clinic saying that your glands would start working again?  That has me curious, is it probable?  Or is this doctor just trying to put a spin on things to make you go away (as he has no real answer)? 

By this reckoning, I should not put plugs in my eyes as the oil glands will all start to work soon?  Like you, it's been several years and I don't see it anytime soon as my eyes are getting worse, not better. 

Hopefully someone with more knowledge will be stopping by soon, and can give us some more information.

Take care -

Patze

[Wynter]

I think the doctor is trying to put a spin on things. My glands haven't worked properly since 2004 and maybe even before that. It would be nice if they would start working again or even working a little better, then maybe I could keep my job, sleep better at night, start exercising again, and have a decent physical relationship with my husband. As you can see, I am quite mad at the world right now.

The Cleveland Clinic doctor prescribed an antidepressant that supposed to help me sleep better, as I am only supposed to take it at night. I took it for two night and it gave me horrible axiety. I am explained to the docs I am not depressed, just frustrated.

Anyway, I have to find another doctor.

[Patze]

Gosh Wynter, that sounds a bit like the last neuro I had.  He'd prescribe a strong antidepressant every day and twice on Sunday without me even asking for it, but he wouldn't prescribe a mild pain killer for occasional use only.  Gee, and they wondered why I left  .

Hang in there lady, and I'll keep the digits crossed and hope that the next doctor is one that will work for you, not against you!

Take care my friend -

Patze

[KJ]

  What kind of antidepressants did they put you on Wynter?  I don't think that gp's should be prescribing them in a situation like this, just the same as a psycologist not diagnosing patients with Sjogrens.