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Living with Polyneuropathy CIDP, GBS, & CMT

New Members

I’ve accepted a number of new members in the past few weeks. Please take a moment to check in with us! Tell us about yourself.

The site is searchable, so if you have any specific questions you can ask away and look through existing conversations.

CG

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I’m not sure I belong in this group, but I check in occasionally. I’ve had weird symptoms for years, with no diagnosis. I thought for a while it might be spinal stenosis, but two MRIs said it wasn’t. I researched some more and thought it might be CIDP. Recently however, a thorough workup at a University-based Neurology clinic resulted in a diagnosis of small fiber neuropathy. The “weird symptoms” they said are an autonomic neuropathy, that is the same thing as my peripheral neuropathy, only affecting the autonomic nervous system. They wanted to call it diabetic neuropathy, but I went armed with proof that the peripheral neuropathy was well established and documented in 1994, and I had perfectly normal blood sugars going back to 1989. Then they said it was “idiopathic” neuropathy in 1994, but since I developed type II diabetes in 2003, that everything since then is due to the diabetes. That simply doesn’t make sense to me. My diabetes has been very well controlled since then, with a minimal dose of Glipizide but mostly with diet. My A1Cs hang around 6 all the time, and I have no sign of diabetic damage to my eyes or kidneys or circulatory system. So I know that I have peripheral and autonomic small fiber neuropathy, but as far as I am concerned, the cause is till a mystery. I have had this problem for at least 30 years. Come to think of it, I have been married for 30 years. Maybe my husband is the cause, LOL. I am 73 (will be 74 in June). I had esophageal cancer, diagnosed in 2005, and had an esophagectomy in 2006, and am still here to talk about it. I have been mentoring several esophageal cancer support sites for the last ten years, so it was not a great stretch to look for support sites for the neuropathy.

Haha! @Judmilla your comment made me laugh- thanks for checking in. Good for you for advocating for yourself (gosh that turned into a mouthful). I really like this post from our moderator support TJ last year- just like CIDP the “how” and the “why” isn’t well understood making our membership perplexing, frustrating cases for physicians.

On top of dealing with neuropathy, you are a cancer survivor too! Gosh, you deserve an award for your bravery.

Thank you, and thank you also for the link, it was interesting. I can’t say for certain that a vaccination was or was not involved. I had a vaccination for German Measles in 1982 or 83. I had a bad reaction to it, which they denied had anything to do with the shot. I got very sick and my hands were swollen and I could barely move. They did some bloodwork and said I might have rheumatoid arthritis, but the condition as well as the blood results cleared up within a couple of months. The neuropathy began to be noticeable a few years later. I also took very high doses of vitamin B6 at one time, but stopped when I read it could cause a neuropathy. I’ve told this to every doctor I’ve seen in the last 35 years, but they’ve all shrugged and told me there’s no such thing, and treated me like a hypochondriac. The neurologist who did the recent workup said my bloodwork showed no signs of autoimmune disease. I had thought it might be because there is a correlation between left-handedness, allergies and autoimmune diseases in families. (Not necessarily in the same person, but withing family trees. There are many in my family tree with allergies and left-handedness, and I have a niece with autoimmune alopecia. (See research by Norman Geschwind, In the early 1980s. He got that far with his research, then died prematurely of a massive heart attack in his 50s. I don’t think anyone ever followed up on his research.)

Hi
I have CMT… I’m 45 and still going through corrective surgery… it’s been difficult but still trying to get through it. Each day is painful but I try my best and that’s all I can do. God has given me a new day every morning that I wake up…
Jules

Hi Jules,

Keep being strong :slight_smile: How is the corrective surgery going?

CG