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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 26, 2024 | Replies (3053)Comment receiving replies
I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
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Restless Leg Syndrome
Why are your arms in braces? Carpal Tunnel Syndrome is just in your wrist.
These braces are like fingerless gloves that loop over the thumb, cover the palm of the hand, wrist, and about half way to the elbow. Hard base to keep the wrists straight combined with three adjustable velcro straps to keep the brace in place. Like trying to do anything with boxing gloves on. My caregiver massages in the kush creme on hands, knuckles, and wrists each day and then straps these things on me. The ointment kills the pain. I take the braces off for a few minutes at a time to be able to use my PC, but then back on again. The doctor insists I wear them 24 hours a day! She sent me to a specialist to have them fitted. Imagine trying to sleep with those things on - it's not easy. Also not easy to control my wheelchair with only the thumb and forefinger to use on the controls.The pain (without the creme) runs from the palms of my hands up past my elbows. I apologize the the long whine. It's just that this is the first time I have found a message board where I can meet others who have this disease. I went to the Amyloidosis Organization conference last weekend and discovered that most of the others there had not yet reached the point in the progression to have carpal tunnel syndrome and most were still ambulatory enough not to be in a wheelchair yet,
I have had light chains checked but mine are fine, they can’t do the surgery to carpel tunnel syndrome. My husband had both hands fixed and it was a one day surgery?
@lynsorensen - never heard of "free serum light chains" -
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Thank you - What is RLS stand for? I would love to go to the Mayo Clinic but my insurance will not pay for my visit since there are doctors I can use locally. I may change my insurance in December so I can see someone at the Mayo Clinic. THANK YOU!