Finally Diagnosed

[Calli66]

Definitely. Skip the biopsy. You have more than enough evidence to show you have Sjogren's.

Calli

[gurs]

Hi Tim,

With your double stranded DNA..sound like you might have lupus/SS  thing going on. I have them both and also have the
horrific neuropathy you describe, as many of us do. Ive yet to find something that works well for me on this..i cant seem to tolerate all the medications very well.

Sounds like you have a good Neuro..funny, all these docs all say "Fibro" when there are no answers. I wonder how many people with
Fibro actually have undiagnosed autoimmune or hormonal issues? Do they not teach this in medical school? Im really getting tired of educating people on this and how severe these diseases are...and that SS is much more than dry eyes/mouth and some fatigue.

Start with the plaquenil and go from there. Hang in there...your on the right path now!

Gursie

[Tim]

I talked to the doctor about the lip biopsy, he said that it should be done based on the schirmer test only showed moderate dryness. Even though autoimmune antibodies are present only the SSB not the SSA was positive. So Based on ANA, doulble stranded DNA and SSB all positive he still want's the biopsy. He said we will still start on the Plaquenil even if I have a negative biopsy.

So how bad can it be?


Tim

[Patze]

Hi Tim,

Glad to see that you have some really on the ball docs, and I've found that that is half the battle with AIs!  Lucky you!

About the lip biopsy, I'll spare you my story as its been posted many times (use the search engine and type in lip biopsy....you'll find a ton of stories about it there).  I will mention that most members that have had it done have little to no problem with theirs, ever, and others were not as lucky (like me). 

If you can't find what you're looking for there, don't be shy and ask away as there is usually someone about that just might be able to help.

Take care of yourself and I'll keep the fingers crossed that your biopsy goes well -

Patze

[gold55]

Hi Tim,
I've worked in Ophthalmology since 1988 and a retina specialist in the practice said he's not seen one permanent eye condition using plaquenil during his long work history.  The doses given now are so low that the bullseye maculopathy is almost a thing of the past however, your cornea needs to be examined for Plaquenil deposits.  I'm not sure (long-term) if the deposits cause any damage...I don't think so and don't believe they negatively effect your vision.   I would think if there was an unusual amount the eye doc may make some suggestions to your rheumie but the docs I've spoken with feel plaquenil is not as big of a problem as it was years ago.  Your double stranded DNA test also makes me think of something other than SS.  Glad you're happy with your results and your physicians.  Hang in there!  Jill

[irish]

Tim, Welcome to the site. It sure is suspicious for sjogrens, that is for sure. Especially with the pancreatitis which can show up with autoimmune disease. Sjogrens affects the organs that secrete and the pancreas secretes hormones.

I am also concerned about the double stranded DNA. I am a myasthenia gravis and sjogrens along with 3 other autoimmune diseases and severely low t-cells related to AI. My immunologist does the DNA blood work every so often as he keeps saying to me "you sure remind me of a lupus patient". Sorry to keep bugging you but with the positive DSDNA I would make sure that this is not forgotten. The treatment is still the same as the sjogrens, but the organ damage can show up with the lupus.

Make sure that they check your kidneys our for sure. Also, sjogrens patients can also get something called Renal Tubuler Acidosis and we all need to make sure they watch us for this also. It is very common for sjogrens to tag along with lupus and myasthenia gravis and with Hashimotos or thyroid involvement. Actually, there are a lot of AI that have sjogrens as a tag-a-long.

I would avoid the lip biopsy also if possible. To me it is sort of ridiculous with all the symptoms you have had over the years. I got the dry eyes as the very last symptom. They showed up after I had a positive lip biopsy and before the positive blood work.

As far as why don't docs look for AI disease. That is the million dollar question. I had symptoms for 40+ years before I was diagnosed and I kept telling the docs that it had to be AI and nobody listened. It seems to me that if a patient has many complaints and nothing shows up why not test for AI and see what turns out. If the blood is positive the mystery is solved. If the test is negative I would think that testing down the road should still be considered.

I don't know too many people who enjoy going to the doctor and wasting their money on doc visits and blood work that is useless. Why they have to treat us all like mental cases is beyond me. After I was diagnosed I told a couple of doctors that I must have the words "nutz" written on my forehead cause that is how the medical profession treated me!!!

Hope you can get some relief with the Plaquenil. I just started it a week ago and I am hopeful that I will get some relief with my weird issues. Do not be surprised if you need to take something stronger for the neuro pain. Plaquenil may or may not help that issue. We are all different and some people need to be on both the plaquenil and the Cellcept, Imuran, etc. Good luck. Irish

[smallfry]

Hi Tim

Welcome, good luck with the plaquenil.

Cheryl

[gold55]

Talking about "nutz"....after my primary care doc "finally" referred me to a rheumatologist (I don't think he could stand my crying nor my husband sitting in the exam room which never happens)....he referred me, sent out my records and then had the gosh dang nerve to tell me he doesn't need to see me but once, maybe twice a year now and only for "primary care stuff"!!!!!!!!!!!!   His ignorance of Sjogrens and other AI issues is what prompted that remark I'm sure!!!  Anymore PCP's want the easy cases of colds, flu, get old and then die!  I'm already on the search for a new PCP.....they need to work as a team with my other doctors! grrrrrrr!!!!

[jasonsmith]

Hi Tim,

With your double stranded DNA..sound like you might have lupus/SS  thing going on. I have them both and also have the
horrific neuropathy you describe, as many of us do. Ive yet to find something that works well for me on this..i cant seem to tolerate all the medications very well.

Sounds like you have a good Neuro..funny, all these docs all say "Fibro" when there are no answers. I wonder how many people with
Fibro actually have undiagnosed autoimmune or hormonal issues? Do they not teach this in medical school? Im really getting tired of educating people on this and how severe these diseases are...and that SS is much more than dry eyes/mouth and some fatigue.

Start with the plaquenil and go from there. Hang in there...your on the right path now!

Gursie

I think the reason they say "fibro" is because it is easy as there isn't any blood tests for it. And there really isn't anything that can be done. So, they say "fibro" learn to live with it, no need to come back.

Same thing for overweight and smokers. As doctors will blame peoples problems on them smoking or being overweight.

[stephL]

Same thing for overweight and smokers. As doctors will blame peoples problems on them smoking or being overweight.

I agree Jason! The heaping of guilt on the patient takes many forms.

[Tim]

Well I had my lip biopsy yesterday, not so bad. Had the choice of in office or in the surgery center, chose in office (cheaper). She numbed the area very well (this hurt the most) and then removed what ever was needed. On a pain scale of 1 to 10 I give it a 4. Ended up with about three stitches and significant swelling. Only soft food for the next 24 hours. Some pain at night which woke me up, took a pain pill and was fine. This morning some swelling and little pain. Doc says they will also check the tissue for Lymphoma based on my cancer history along with the risk that comes from Sjogrens. The worst part about this is drinking from a cup or bottle everything dribbles on my shirt, had to use a straw for everything. Just waiting on the results!

Tim

[A66eyroad]

So glad you had an easy time of it.  Keep us informed!

[Meld256]

Tim,

Sounds like the biopsy went smoothly.  Hopefully, you'll be able to eat more normally soon, and not dribble your drink much longer. 

Wishing you well with the results. Keep us posted.
Melinda

[gold55]

you are a real trooper to go through with the lip biopsy....best of luck with your healing and the results!

[Patze]

Hi Tim,

Glad that the biopsy went well for you and I'll keep the fingers crossed that the sample will point to an answer for your doctor.

Take care and keep us updated, okay?


Patze