1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Sjogren's and neuropathy

Posted , 19 users are following.

jeniferpg
jeniferpg

I've just been diagnosed with Sjogren's from a lip biopsy that the ENT did. My Rheum says it explains nearly everything else I have:

Neuropathy

Small Fiber Neuropathy

Restless legs

Dry Cough

Dry eyes

Dry mouth

Dental decay

Taste changes

Muscle pain and weakness

Enlarged Parotid glands for three months

And on and on.

Is there anyone out there with neuropathy caused by Sjogren's?

Already on Lyrica, Cymbalta, Pramipexole, and Rheum wants to put me on Plaquinil.

Axial glands also painful and swelling worse: being sent for biopsy and oncology blood work. Anyone progressed to Lymphoma from Sjogren's?

Thanks for any help or any light you can shine in my darkness sad

Jen

4 likes, 42 replies

42 Replies

Prev
  • Ccfbarb
    Ccfbarb jeniferpg

    Posted

    Hi Jeniferpg,

    Your Sjogrens sounds so much like mine ! I also was diagnosed with lip biopsy and have a lot of the same symptoms, plus more. Mine started with an overnight total hearing loss in my right ear! I was so freaked out. Ear doctors claimed autoimmune inner ear disease, but since then , my rheumatologist says I have Central Nervous System involvement of my Sjogrens. This is not something that is common and some doctors miss it, I'm on Cellcept ( immune depressant), pramipaxil and Horizant for restless legs , numbness in feet and legs . I was, up until 2 days ago on Plaquenil for over 10 years ( that's about how long I've had this), but developed retinal toxicity and had to stop Plaquenil immediately . My Rheumy reassured me that the scans given each year are highly sensitive and my vision should remain stable.  The Cellcept really had helped me live a near normal life. Just recently I've gotten the painful and numb feet and legs, I got most of my hearing back with the use of prednisone and down the road from such high doses of prednisone, I had to have a partial shoulder replacement because of bone death . So... that's my story and if you have any questions I'll be happy to try to help ... CNS involvement can be the closest disease to MS there is, and I've been tested for MS a couple of times.

    • tj268
      tj268 Ccfbarb

      Posted

      Hello! I just read your post  to Jennifer and I am sorry about your CNS involvement. I am very curious about your symptoms and how you were dx'ed. I have also been tested for MS and Lyme. My MRI was clean but it is still suspected. I think it is a combo of SJS and Fibro but am unsure. I just like everyone else want answers. If you are comfortable talking about it I would really like to know more. If you're not ok with it I understand too! Wishing you a great day!

  • kris_H
    kris_H jeniferpg

    Posted

    I have neropathy some days worse then others do not see the new remo doc at the sojgrens clinc at penn until september 20 so I am on my own only taking nardol but it makes me sick.I feel like a broken record complaining about my symtoms but its real and its my reality.So hang in there there is a lot of people on this forum with a lot of good advice and support
    • aitarg35939
      aitarg35939 kris_H

      Posted

      Nardil is  designed for depression and anxiety.  It metabolized through the liver.  Did the doc say that it would treat SS?   Also, is one supposed to follow a particular regimen of eating with the med or eating a certain number of hours before or after?  The pharmacist can answer that question.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.