Symptoms I thought was AI neuropathy

[Carolina]

Dear Sjogren's angels,

Here's a link to the Mayo Clinic which lists the symptoms of a problem I have, severe degeneration of my neck.

I was convinced that I had an auto immune neuropathy because I have SICCA and Interstitial Cystitis.  I'm still not convinced that something will eventually show up.

But this Mayo link is interesting!

http://www.mayoclinic.com/health/cervical-spondylosis/DS00697/DSECTION=symptoms

Kisses

Elaine

[anita]

Carolina,

I have not yet made a thread about the latest finding for me, but now is as good a time as ever to mention it since it may be relevant to you.

I too am sero-negative, but do have a positive lip biopsy...not by numbers of infiltrates, but by complete destruction of the salivary glands.  I have always had a vast array of neuro symptoms to include sensory loss, pain, vibrations, autonomic issues with BP, heart rate, gastroparesis, temp control, balance...the list goes on.  I think you share many of these, right?

Anyway, my doctor at Johns Hopkins is VERY into research of the neuro manifestations of Sjogren's (he's both a neuro and rheumy--only one in the country).  He had me do an MRI using a new protocol to look at the dorsal root ganglion (on the lower spine).  It was there they found a more intense signal and enlargement of the ganglion indicating ganglionitis (which is a slowly progressing neuro disease).  You will not find much on this via google but there a few articles directly linking sjogren's to ganglionitis.  Keep in mind that neuropathy CAN cause sicca.  

Sadly there is no effective treatment and very little is even known about this because they are just now getting a look at it where it used to only be found during autopsy.  Treatment is supportive of symptoms whether it be sicca related, autonomic, or pain.

My doctor is CONVINCED that Sjogren's causes this damage to the ganglion which in turns affects everything else because it disrupts all kinds of nerve signals to/from the brain and elsewhere.  Ironically, he told me Friday that almost all his Sjogren's patients are showing ganglionitis...how odd is that???  Although, he only sees patients with both sjs and neuro problems.  His research will continue, but will of course take time.  

I would inquire at Duke (I think that's near you, right?) if they have the capability to do MRI's with the DRG protocol (which stands for Dorsal Root Ganglion).  They should also do a cervical spine MRI to rule out spondylosis.

There IS a reason you have all these neuro symptoms with the sicca!!!

Good luck,
Anita