Neuro problems

[JoannaP79]

Hi all,
I don't have a diagnosis yet. I keep thinking of sjogrens but little is pointing that way.
I don't have dry eyes but I have something called tear film instability. I have no positive bloodwork.
My symptoms are small fibre neuropathy in my entire body. It's not length dependant - so in my face and even teeth.
I am having autonomic problems too now.
I also have awful muscle twitches and my legs are atrophying. EMG, nerve conduction and MRIs are not showing anything.
Is it worth pushing for a lip biopsy? My rheum thinks there is nothing suggesting sjogrens so doesn't want to do this. I have had the schirmers eye test which didn't show dryness.
I already have an autoimmune disease called ankylosing spondylitis which is why I'm thinking sjogrens.
Anyone present like this with no other dryness issues or blood work?

[irish]

I am not one to jump on the lip biopsy band wagon. I say this with tongue in cheek because I had one done that came back positive. I had been ill a lot for many years and had no clue what a lip biopsy was about.

Anyway, with your case I think it might be a good idea. It could come back negative but I would not let that discourage you. Many, many people have seronegative autoimmune Sjogrens. You have so many autoimmune things going on and the small fiber neuropathy is common in Sjogrens. You can do a search on this site using the phrase small fiber neuropathy and you should get many threads with info and experiences of people with this condition.

Also, you don't have to have dry eyes or dry mouth. Many people don't get those symptoms until later. I did not have dry eyes until after my diagnosis with Sjogrens in 2003. I had been having autoimmune symptoms since 1964!! I also had a slight dry mouth since my 20's and had deterioration of my teeth and ended up having them all pulled in 2004 after they cost me a whole lot of money. I am more dry now but not as dry as a lot of people.

Doctors have to be flexible with this disease and have to accept the symptoms for what they are. Not everyone goes by the book when it comes to symptoms. Everyone has their own personal story. Hopefully your doc will be cooperative but if he does try to do diagnosis or to treat your symptoms you night have to find a different doctor. Then again it really doesn't always matter if you have a diagnosis of Sjogrens cause the important thing is to have a doctor who treats your symptoms. You might want to see an immunologist who likes to deal with the autoimmune diseases as they often can add a whole lot of information and insight into the disease issues. good luck. Irish

[Carolina]

I would think that since you have an autoimmune condition, probably your Immune System is using autoantibodies to attack your nerves.

You don't need a diagnosis of Sjogren's to have  serious nerve damage.  lF you have Sjogren's without any of the standard symptoms, Plaquenil or one of the other Immune Suppressants, might slow down the progress of nerve damage, or even stop it for a while.  This is true of most autoimmune conditions, however.

What is your treatment for ankylosing spondylitis?

I have profound Peripheral Neuropathy and small fiber neuropathy over a great deal of my body. My Immune System does NOT use autoantibodies to inflict this (and other) damage, but probably uses another biochemical called Cytokines.

By the way I take 2400 mg of Gabapentin a day and I am free of the horror of SFN pain/tinging/itching/burning/stabbing.

I wish you the best.

Hugs,  Elaine

[trejonina]

Hello, Alpha- Lipolic Acid is supposed to help with neuropathies and pain. Also Magnesium Chloride, not plain magnesium.