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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.
Do you have a diagnosis you can share?
Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.
Hoping for some answers for you.
John
Replies to "Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is..."
Couldln't agree more with the definition of idiopathic. Everybody gets it in the end; just depends on how long you live in this new world of electromagnetic fields bathing us all in a toxic atmosphere of cell towers, routers, modems, cell phones, further distancing us from nature. We're alone now in this strange new world. I take no Rx meds, just researching any herbs and supplements from the naturopathic world of and TCM medicine. Exercise helps greatly; also massage and reflexology. My latest diagnosis: axonal multi sensory motor neuropathy. Just another name. Neurology has no clue. Lifestyle is everything. And what we feed this amazing body. If we protect the nervous system early on, perhaps this could all be avoided and delayed.
I have numbness in my left calf and top of left foot and some around the feet. I don't have friends, family and souls to take me around. I am attracted and have many interests and was always independent. The numbness causes me to go off balance and must use a walker and hold onto someone too
I had back surgery and had it before the surgery. Surgeon said it should go away with time as nerve was compressed for a long time.
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I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.
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Could one of the wise souls on this thread clarify for me why I get pins and needles and hot feet only at night? I have a non diabetic sensory PN triggered by long term B12 deificiency due to autoimmune disorder (intrinsic factor). In fact my feet are cold all days and an hour or two after going to sleep, they catch fire. I recently discovered cold socks (gel pad based) which have been a life saver or I will not be sleeping very much. Amazingly, I am fine once I am back on my feet. I have to assume it has something to do with vertical vs. horizonal orientation of the body. Wish I could sleep vertically! help!!!!