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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 19 hours ago | Replies (6891)Comment receiving replies
Hi. I’m Lou Ellen. I’ve been having nerve pain, fatigue, exhaustion, vision troubles and other symptoms for 5 months. I have stabbing pain, burning, shooting pain, trouble breathing deeply and terrible itching that makes me want remove my skin. I’ve had CT scan, allergy testing, MRI, EMG/nerve conduction study, EEG, chest X-ray and skin punch biopsy. Neurologist can’t find any and thinks anxiety is my problem. I am 58 and not ready to give up on enjoying life, but I really need a solution. Gabapentin isn’t helping and causes nightmares. I’m considering trying a different doc, but not excited about starting over and paying a lot more. I welcome suggestions.
Replies to "Hi. I’m Lou Ellen. I’ve been having nerve pain, fatigue, exhaustion, vision troubles and other symptoms..."
Hello Lou Ellen @louellenc, Welcome to Connect. It sounds like you've had all of the normal tests, including a skin punch biopsy but they weren't able to find a diagnosis. I'm sure you are not alone and others with similar symptoms have struggled to get a diagnosis and treatment. You might find this related discussion helpful:
-- May have undiagnosed autoimmune disease:
https://connect.mayoclinic.org/discussion/may-have-undiagnosed-auto-immune-disease/
You mentioned your neurologist couldn't find anything and thinks it's anxiety. Have you thought about getting a second opinion from a specialist like a neuromuscular neurologist?
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Hello@louellenc , this is my first time on this page and I noticed that you commented like 54 minutes ago so I just wanted to respond to some of the things you have posted here. I was diagnosed with neuropathy 3 years ago and at that time I was getting numbness and shooting pains and my foot area and my leg. Now and the past 3 years it has progressed I have absolutely no feeling in my feet and my legs up to my knee. I couldn't even walk I was using a walker and then I came but I started swimming and I got a lot stronger now I can even sit in the bathtub and get out. People often wonder how I walk and I really think it's sensory. You mentioned all the testing you got but you didn't mention the results of the EMG. I was just curious I have had several at least 12 or more and it's just progressing. I also have it in my hands. The one thing I want to mention to you is I went to the eye doctor because I need a glasses and I found out that I have optic neuropathy as well. I take a very large dose of Gabapentin perhaps you need more I know it has side effects for some people but I take 3600 mg a day and it really helps at high dose. I go to the eye doctors because I need glasses and it was very disturbing but when I'm curious about is if anybody knows on this forum is there any correlation between my peripheral neuropathy and my optic neuropathy. Unfortunately I just feel dead and a lot of times my legs and my feet will cramp up at night so I have to stand up occasionally. Even my toes I changing the shape. I don't know what else to do. My neurologist is testing for toxins and heavy metal so we'll see what happens but it's probably going to end up being idiopathic. I'm happy to be alive but the quality of life has changed. Good luck on your neuropathy Journey.