i am seeking members who not only have autoimmune issues (as i do) but other problems such as neuropathy. I believe these issues are related and think we need to join together to get the attention of the medical community. I am not ready to accept a diagnosis of dealing with pain. I have my own autoimmune issues as well as neuropathy and believe there is a connection.

Please see my posting under peripheral neuropathy. i am bound and determined to pursue this.. would love some help.

Spkar - I have both too. I have a lot of autoimmune diseases which started when I was 15 and then was diagnosed neuropathy after surviving high-dose chemotherapy and radiation. The neurologist said the neuropathy was from one of the chemo drugs - Vincristin. But my mother has it, my sister has it, cousins, etc. It's hereditary. Nannygoat

For over two years I have been helping a relative try and survive cancer. Sadly this relative lost his battle about a month ago. As in over 40% of cancer deaths he died of cancer cachexia, not of cancer. Cachexia is simply "wasting away". My observations from this experience confirm my belief that cachexia IS the disease of cancer. Cancer cells and tumors merely represent tissue capable of surviving in an environment which is starving human cells to death.

Cancerous tumors can choke off organs and essential functions at any time, killing the victim and cutting off the development of cachexia. These premature cancer deaths obscure cachexia as the true disease of cancer.

What is clear in modern cancer treatment is the inflammation and neuropathy associated with cancer. Left unchecked, it progresses into paraneoplastic disease. Like you and your relatives, my relative had terrible neuropathy. The neuropathy progressed into full-blown neuromyotonia.

He was a serious consumer of sugar and wheat.
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Hi, I have peripheral polyneuropathy and have been told I most probably have Sjogren's. None of my tests for Sjogren's as of yet have been positive but I do have severely dry eyes/nose/mouth and quite a few other symptoms (Raynauds etc). I am currently awaiting my second lip biopsy which hopefully will confirm the Sjogren's. I have been told (and have read) that polyneuropathy can be a side effect of a number of autoimmune diseases, including Sjogren's. I believe the medical community is quite aware of these linkages but that there is little being done to figure out cause, treatment etc. I also find it confusing how I can be told there is no treatment for Sjogren's but I could try prednisone for my neuropathy (which is caused by Sjogren's....). Anyway, good luck, let us know how it goes.

I was first diagnosed with Multifocal Motor Neuropathy which started with painful cramping in my right hand and fingers. I have now gone to a diagnosis of CIDP because of pain and severe sensitivity in my right hand plus weakness has now gone over to my left leg and foot.
I am told this is a rare disease so it helps to find people and exchange notes. I am on IVIG treatments which so far have kept things at bay.

I have just been diagnosed with Neuropathy & myopathy due to a connective tissue disease, It is an overlap with my Myasthenia gravis. Back to the Reumy for a look on worsening symptoms !

My neuropathy is related to autoimmune diseases. It's genetic, not diabetic or alcoholic induced. I'm on 5mg of prednisone a day to keep it stable.

Hi - can you tell me how the prednisone is going? One of my neurologists recommended it (the other advised against it) - so far I haven't taken it for fear of side effects (glaucoma, sleeplessness, irritability, weight gain etc). I would love to hear whether all these concerns are valid (knowing that everyone reacts differently)

thanks

I have Crohn's, eczema, arthritis, episcleritis, and peripheral neuropathy. I avoid prednisone like the plague, as when I was on it initially for severe ulcerative colitis I became extremelydepressed -- no, despondent -- and suffered many of the side effects immediately (my skin thinned and aged 2 decades practically overnight).

Maryec, I have the same dx as you. I have connective tissue disease with features of lupus and scleroderma. What meds are you on? Do they consider your myopathy progressive? They do mine and it seems to be progressing more than I thought. Any input would be great.
susie