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Sat, Sep 21 8:23pm · Sjogrens in Autoimmune Diseases

I have had tremendous muscle weakness, but my tendons bother me most. I tested positive for severe small fiber neuropathy a few years ago in all 5 biopsy sites. Carbamazepine, Requip and Oxy help. I also developed some sort of clotting disorder and have had 2 PE’s and a form of Pulmonary Fibrosis. Really strange.

What are you taking?

Aug 6, 2017 · Living with Neuropathy - Welcome to the group in Neuropathy

I’ve not had negative results with Xiidra, but they do leave a bad taste in your mouth. They work well on moisturizing your eyes, but are expensive.

Apr 10, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I was recently diagnosed with peripheral neuropathy and autonomic neuropathy. I’ve had pain in my feet (primarily left), knees, hands, chest pains, heart palpitations and dizziness. Nerve conduction tests were negative, but my Neurologist performed 5 punch biopsies from my ankle up to my upper arm and they all came back positive for small fiber neuropathy. I am taking 600 mg of gabapentin for 2 weeks and will move up to 800 mg 3 times a day. I have primary Sjogren’s syndrome.

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

@kyjeanne, thank you for sharing. Isn’t it frustrating to try and determine what is Sjogren’s and what is secondary? Are you checking into the possibility of neuropathy? My Neurologist did nerve tests and they came out normal, but the punch biopsies were all positive. You may need to have additional testing.

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

So interesting. I had wrist pain, joint pain in my hands and the Dr. said it was probably carpel tunnel. Blood tests showed Sjogren’s which was a total surprise to me as well. I have some sort of eczema type of spots forming on my hands, forearms and lower legs. They almost feel like plaques if that makes sense? I was allergic to Plaquenill, so tried Imuran for 2 years and towards the end of that 2 years, my symptoms really were out of control. I’m on Methotrexate, but so far it’s not helping.

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

@kyjeanne, I’m using Xiidra and they work well, but I almost have too much moisture now. Better than the alternative I suppose. I’m sorry to hear that the fatigue and pain are getting worse for you. Where is the majority of your pain? It sounds like we have a great deal in common regarding symptoms. I am 48 years old and not working right now, but have not applied for disability or SSDI. I’m hopeful that I can find some sort of relief and go back to work, I really love staying active. At this point, I can’t function well and I simply can’t imagine that it’s all Sjogren’s related. Do you have any neuropathy?

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

@marylou705, I’m sorry to hear about the impact to your ears and eyes. I have never tried any of the biologics, but am open to them as a treatment option instead of the methotrexate. I’ll be curious to hear about the results from your consultation and wish you all the best. Dry eyes was not a concern of mine when seeking a diagnosis at all. Apparently, they are very, very dry, but I had gotten used to them and was more bothered by joint pain and dizziness. What were the issues with your ears? Did you have ringing and fullness in your ears as a symptom?

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

@kanaazpereira, these are great suggestions, thank you! I’ll check them out now………