Sjorgens
 

Excuse all the posts, I'm very desperate today.
One of the extensive list of symptoms I have is a regular flare up in my lips. They go red, a bit swollen looking, burn like hell fire and feel prickly and flaky. Does this in any way point to a Sjogrens diagnosis? My rheum won't entertain it as my bloods came back negative for it and I have no dry eyes or mouth, just full body sfn. He won't do a lip biopsy even though I begged. He said it would be unethical with no other indicators. I kind of see his point but i have read SFN can precede all other sicca symptoms. I already have one autoimmune which affects the spine, I'm sure the DRG are being attacked. Am I right in thinking the DRG are throughout the spinal column?_

I'm sorry that you're under such stress and in such a bad situation. This thread might be useful: http://neurotalk.psychcentral.com/thread229739.html. My serum came back negative too, but I do have devere dry mouth and watery and itchy eyes. If you can, you can always try another neuro or someone else, who will do it. Negative blood tests don't always mean no Sjogren's, but that along with no dry mouth and dry eyes, etc. may mean it's not Sjogren's, since body wide SFN can be a host of other things. Mine is also body wide and Sjogren's is one possibility, but even with dry mouth and eye problems, Celiac and other possibilities are being looked into as well. I hope this helps a little and best of luck!

The flaring of your lips with swelling and redness is not typical for Sjogren's, but CAN happen...just not all that common. It's more about mouth dryness...and things like this (with your lips) would happen much later when Sjogren's symptoms are more severe.

If you suspect Sjogren's then the lip biopsy is the appropriate test...especially if the the labs are negative (as up to 40% of those with Sjogren's have negative labs). Therefore, the biopsy is the ONLY way to accurately Dx Sjogren's if you have negative labs. You should see a different doctor, if he is not willing to order this test.

I do understand him questioning the need for the test since you don't have dry eyes/mouth, but you are correct in that SFN can show up first with sicca coming later (this is how mine appeared---although I had some dryness of my mouth all my life, but never considered it abnormal, because I never experienced anything different). I don't see how you can have 'flaking' of your lips and NOT have some dryness. It seems that would go together.

Also: if you have dental issues (like excessive cavities or other dental problems that your dentist thinks might be from Sjogren's (and lack of proper moisture), then use this as a means to get the biopsy ordered. Dental problems are VERY common with Sjogren's and can start showing up with first signs of dry mouth...even before you notice a big difference. All it takes is improper balance of bacteria in the saliva (higher concentration of bacteria) to affect your mouth, which causes gingivitis and cavities.

Being that you have a diagnosed autoimmune disease already, it should help to get the biopsy...as there is what they call 'overlap' of autoimmune diseases where one triggers another, or they come together.

Hope this helps.

Sjogren's World has a wonderful forum, and many there are NOT positively diagnosed/have other autoimmune conditions.

http://sjogrensworld.org/forums/index.php

Try asking your questions there Joanna. It's a very supportive and knowledgeable group.

Hugs, ElaineD

Im guessing the doctor, is trying to avoid malpratice, or violating protocol. even if you have a suspected autoimmune, in the states the doctors here in some insurances would allow such testing, especially if you have another autoimmune disease, autoimmune disease usually co-exist with other autoimmunes. When you say autoimmune attacking your spine, is it ankylosing spondylitis?

It is pretty hard to suggest if you dont have dry eyes or dry mouth,nose, joint issues. Although RA or ra-like diseases, and sfn can cause these symptoms as well.

Hi all, thank-you for all your helpful info. Elaine, that's great. I'm going to look on there. It would be helpful to compare notes with other Sjorgens people.
Neuro problem, yes I have ankylosing spondylitis and it is out of control at the moment. I know this must be controlled as is likely the fire fuelling the sfn. I have a real predicament with treatment options for the A.S. Long story. :-(

[QUOTE=JoannaP79;1195705]Hi all, thank-you for all your helpful info. Elaine, that's great. I'm going to look on there. It would be helpful to compare notes with other Sjorgens people.
Neuro problem, yes I have ankylosing spondylitis and it is out of control at the moment. I know this must be controlled as is likely the fire fuelling the sfn. I have a real predicament with treatment options for the A.S. Long story. :-(