still sjogren's with only neuropathy?

[mom16]

Hi,
I'm wondering if anyone can help me understand what is going on.

I have had peripheral neuropathy for a year now and have been told that the type I have is similar to those with autoimune diseases (such as Sjogren's).  I do not have dry eye or dry mouth, but have dry skin and dryness in other areas.  My lip biopsy came back fine and my SSA test came back high at first, but since then has gone down and now even come back normal when Dr. Birnbaum tested it recently.

I'm wondering if anyone else has neuropathy without the common symptoms of Sjogren's.  My dad has Sjogren's, but I understand that it is not hereditary.

I am on nortryptoline now to help with the symptoms of neuropathy, but am told that this only covers the symtoms, it's not until I find what's causing the neuropathy that I can then treat it and stop the progression...and it definitely has progressed in a year.  (I have tingling, burning, aching sensations in my legs arms, head, across my chest, hands and feet).

Does this make sense?  Has anyone else experienced this without the extreme dryness?  I feel lucky to have Dr. Birnbaum as my doctor, but am now waiting for my insurance company to approve my follow up visit with him.  The waiting and not knowing is very frustrating as I'm sure you all know.

Karen

[Scottietottie]

Hi Karen 

Welcome to Sjogren's world.

About 30 years ago I was sent to a neurologist with 'gloved sensations' on hands up to elbows and feet up to knees. Periodically I couldn't make it up stairs. I was tested for MS. I didn't have it. The sensations wore off. They came back a few years later. I found it hard to walk in a straight line. I would get patches of skin that hurt so bad I couldn't have my baby sitting on my knee. I never got an explanation. There was no dryness then.
I was tested for MS again. The neurologist said I didn't have MS but that I should ask my GP to refer me to a rheumatologist. He didn't say for what but he did say he believed in my symtoms. My GP didn't and I wasn't referred.

I eventually got an SjS dx in my fifties. By that time, dryness was an issue.

I would say that Sjogren's is a possibility but that like us all, you have the frustrating wait for test results. I'm not a medic. Other things can cause neuropathies. I hope you get answers soon. Keep us posted.

Take care - Scottie 

[baileybugster]

I have all of the neuropathy issues but I have Sjogrens.  I was diagnosed by a lip biopsy.  The only thing is that I don't have a lot of dry eye problems but I do have dry mouth.  I also have patches of dry skin and a rash on my chin.

I hate waiting for the next result or the next doctors appointment.  It just is really frustrating.  I would not have ever thought of Sjgrens for myself so I was shocked when they said that is what I had.

Keep up posted as to what you find out.

Good luck