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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
Replies to "Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small..."
Hello @dustins76, welcome to Mayo Clinic Connect. I have idiopathic small fiber PN also. Thanks for sharing your health concerns. I think it helps to know that you are not alone. I hope you find some relief with the stimulator.
Can you let us know how the stimulator works for you when you get it?
John
I have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?
We are listening. You are not just going on and on. Tell us more as you learn more so we have an opportunity to be supportive. Be safe.
@dustins76
Dustin, it is a maizing you are upright. I do not have nor have I ever had what you have, you may just keep it. So, what I say you do not have to believe. I have some neuropathy from my 2 strikes, my body and brain are not talking with each other at the same time. It can also be true for anyone who has surgery on their back, the messages from the body goes through the spine to get to the brain. (Talk about the "bug" that was found in the "walk in" computer that shut in down.) You could have a "bug" that is causing all your problems. Now, if you believe that I have this bridge I want to talk with you about.
I believe we are ahead of the medical community. The brain is still a mystery to most of the doctors, it may take another 10 years before doctors finally get through medical school and understand the brain better and how it works. Keeping a journal is all we can do and share it with anyone and everyone who wants to read it. I have educated a few doctors because I keep at it. If explaining something one way does not work I will try another way (with more information) the next time I see the doctor. The more you know when something happened and what you were doing before it happened the better you may be able to figure out the relationship between the two. If there is one.
Good luck,
mlmcg
@dustins76 Wow, your neuropathy symptoms sound so familiar. When I talk about the symptoms in the legs and groin, the doctors just look at me funny. Do you see neurologists at Mayo? Were your surgeries done there? If not, where?
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Dustin .. my heart goes out to you and nothing but respect for your insurance.
I can’t add anything but put you in my oraters