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Increasingly Difficult to Accept Peripheral Neuropathy
Neuropathy | Last Active: Aug 27, 2023 | Replies (163)Comment receiving replies
Thank you what did you eventually have? I can't see a neurologist who specialises in neuropathy because that is difficult in the UK unless you go private I did go semi private and was told it was likely small nerve fibre Neuropathy. Now to be told I don't have it makes no sense. I have all the hallmarks of it I should know. A DAT scan to test for Parkinsons is very depressing and doubtful as well. Probably be a complete waste of time.
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Ask your neurologist for a tissue biopsy. They take small pieces of tissue from your ankle up to your hip. Under a microscope they can see the nerves and damage or loss of the amount of nerves you should have.
It took me 8 years of tests. It was pretty difficult. So my diagnosis: non length dependent small fiber sensory neuropathy. Means from the bottom of my feet to the top of my head. Autonomic neuropathy. This is more serious. The disease has killed the nerves in my heart, eyes, kidneys and bladder. Because if the nerve death in my heart they started out putting a pacemaker in plus numerous meds. Nothing is working any more and I am on Hospice. I have about 6 months to live. I’ve been declining pretty fast lately. The only think hospice can do now is make me comfortable. This means a bunch of opiates to try to control the pain.
I hope you get the answers soon. If caught early there is a lot that can be done to slow down the progression of the neuropathy and help to remove your pain. I hope thing work out for you.