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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)Comment receiving replies
I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I've had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I've tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn't provide much hope for repair or recovery at this time. I've been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.
Replies to "I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have..."
Hi, Vickie @vickiekersch
I have peripheral neuropathy, as well, though it's not related to any other of my ailments. I had a spinal cord stimulator implant in May, and it has helped immensely, reducing the pain by around 80% as a rule. If I wear shoes that don't cushion my feet enough, or if I walk or stand too long, my feet hurt a lot with burning pain. The numbness and tingling are still present. I'm having a bunch of tests done right now to see what type of neuropathy I have.
I've worn gloves when driving for quite awhile, because my hands ache from holding the steering wheel. I also have swallowing problems, which are probably related to the neuropathy, and urinary problems, as well. I don't know what other parts of my body will be effected when all is said and done.
I'm constantly amazed by how many health issues and how much chronic pain people live with. Each of us has unique reasons for pushing ahead. I often feel guilty for complaining about the pain I have, when others keep going with far more.
I don't think I added anything new to what you already know, but I wanted to let you know that I and many others are here to listen and support.
Jim
Connect
Hello Vickie (@vickiekersch), I would like to welcome you to Mayo Connect. I can't begin to imagine all the struggles you are going through but I am very glad that you searching for answers. Connect is a good place to start and it will help you find others with similar health concerns and learn what they are doing for treatments. While I also have peripheral neuropathy but my story is pretty tame compared to yours. I too have done a lot of searching and tried just about everything until I found something that works for me. When it comes to neuropathy "cures" one has to be careful and do their own research. You can read my peripheral neuropathy story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
I am tagging a few other Connect members to see if they can provide any information that might be helpful to you. @predictable, @jimhd, @kathyv, @carol94, @briansr do you have any suggestions for Vickie?
John