Originally Posted by Hermes
Hi everyone. I'm new here. My symptoms started about 2 years ago with numbness in my thighs when I stood still for any length of time. My doctor sent me to a rheumatologist who couldn't find any problems and told me it would just go away. Around a year ago the pain started. I went back to my doctor and he sent me to a neurologist. She ordered an MRI of my spine, which was normal, and then of my brain also normal. I then had an Electromyography (EMG) and nerve conduction study (NCS). These also were normal. I was told that all we could do was try and treat symptoms. I was on Neurotin, which didn't work. Pain, sensitivity and numbness got worse and spread into my feet. I went to Johns Hopkins University Neurology in Baltimore, MD and they ran another EMG/NCS and an MRI of my neck - all normal. The doctor sent some recommendations for 3 meds (Neurotin, Cymbalta, Lyrica) to try to my neurologist here in VA. Cymbalta worked fairly well at first later she had to added Lyrica. Hopkins ordered a battery of blood tests, 13 vials of blood - all came back normal. Hopkins then ordered a skin biopsy to test for small fiber neuropathy - normal also.
My DX is Polyneuropathy - Idopathic. Pain, numbness, sensitivity continues to get worse, especially at night. It is also spreading up my lower back. My neurologist referred me to the John Hopkins Blaustein Pain Treatment Center after saying that she didn't know what to do. I have an appointment, first available, in 5 weeks for an initial consultation. I hope I can still function by then.
I do feel very fortunate to be this close to Hopkins as it is one of the top rated medical centers in the country. However, it concerns me even the top hospital in the country doesn't know what is causing this or how to treat it. My fear is that if they can't treat the cause then the symptoms will just keep getting worse.
Anyway I've been reading the posts here and thought I'd share and see if anyone had any thoughts on my condition.
Hi there. Just wanted to say Welcome to Neurotalks.
I'm including a link to our Peripheral Neuropathy forum
Please click on the link and you'll find loads of new friends in EXACTLY the same predicament as you are in. Some know why they have it, but just as many DO NOT know why they have it.
Mind if I ask you a question. And I ask this because EVERY SEEMINGLY KNOWN TEST was done on you. You'll probably have to undergo even more special blood tests, down the road (like my husband did).
I read your post two times. You did not mention ever having a spinal tap. Have you ever had one of those?
And also, (and this is very important). In your development of neuropathy, did you suffer from any stressful moments?
I know, sounds like a nutty question, but in the long scheme of things, we try to help each other.
So try and think. When you began noticing your symptoms, had you endured any major stress in your life.
I'm not saying that your neuropathy is in your mind, please believe this. I'm just trying to see if your body is reacting in a way to something that might have stressed your body to it's limit.
Rare!!! but it happens.
I would also like to share what helped me in MY bout with Peripheral Neuropathy.
When I developed the symptoms (the burning, the tingling, etc, ) in my feet, (I'm a diabetic by the way), I began a regimen of Methyl B-12.
Do a search on these forums, and you'll read about the benefits of Methyl B-12 and neuropathy.
Keep reading and learning.
This website is invaluable for the information it provides.
Best of luck.
Don't give up.