Looking for any insight

07-29-2016, 03:41 PM

I just registered today because I just don't know what to do.

My husband, 33, smoker, weighs about 145 but in otherwise good health has developed neuropathy of sorts. Last May he woke up one day and his legs were BURNING ( bilateral pain, from the KNEES to TOES only) , we played volleyball the day before and thought maybe it was that. So as the days went on the burning got worse and he started getting tingling, tightness, numbness. Again, this is only from the knees to toes. This continued for months. In which time he had a ct of his brain and spine, MRI of the brain and spine , blood work, EMG, circulation studies. Everything came back normal. EKG normal. Lyme disease, MS, Gullian Barre, Lou Gerigs.. all ruled out. He went to a chiropractor who said he needed adjustments, this seemed to help for a week or two at a time. The doctor also prescribed gabapentin, 300 mg, then 900.

He seemed to go into remission and had minimal issues for 8 months! Then slowly it came back, with a vengeance. He woke up a week ago unable to move below the knee. It didn't last long and we went to the ER, once again no answers. I cannot stand to see him this way.

At this point he just wants to know what is going on. His scans showed no tumors. I am second guessing MS, as I know it can come and go. We just want answers and help for him. He's hardly able to work, even though he manages. We are awaiting a referral to a neurologist in a bigger city because the ones here kinda stink, so I am hoping that will result in something.

I am just looking for any information anyone may have. Searching has literally resulted in nothing except diabetic neuropathy which isn't the case!

Are there any other specialists you would recommend?

07-29-2016, 11:29 PM

I am sorry your husband has these terrible symptoms. Sounds from your description you are heading in the right direction.

Neuropathy is a difficult condition. There are a list of neuropathies as long as your arm. Continue to work with a neurologist, but just be aware that there is a good chance that the cause may never be derermined (idiopathic.).

There are thousands of us with idiopathic neuropathy. I am on gabapentin and it helps tremendously. Your doctor may be able to smprescribe a different nerve medicine that is more effective.

Keep seaching until you get answers and remember you can alwsys come here to get more information.

Good luck,

James

08-15-2016, 12:17 PM

If you're going to a neurologist in a large city, ask them if they can do a skin biopsy to confirm small fiber neuropathy.

I have similar symptoms of constant burning, sharp stinging pins and needles, spasms below the knees. Started/ flared up after bilateral bunion surgery.

It took 3 years for a doctor to think of doing a skin biopsy to confirm diagnosis of small fiber neuropathy. I'm still working on pain relief, nothing seems to help.

Best of luck to your husband.

08-15-2016, 05:59 PM

HI there. I have MS and just wanted to chime in.

MS does not come and go; although at times the symptoms are quiet, other times, they come on with a vengance. You stated that he was MRId both brain and spine (the two most common places where MS appears) but was it done with contrast or not? And, who read the films? Was it only the radiologist or did he see a neurologist who actually specializes in MS?

MS is the hardest disease in the world to dx...there is no one test and most neurologists do not read their own films and rely on the radiologists, who often miss things. If the lesions are hiding in his T or L spine, this hasnt been checked yet. You really need to take your husband to a MS specialist and have him order ALL the tests...visual evoked potentials, EMG, all new MRIs. They do them every 6 months during the diagnostic phase. A MS specialist will not only order MS tests, but will also do the skin biospies and all the tests for Lupus Lyme and the hundred other diseases which mimic MS.

He will get you to the right place if he rules out MS.

Best of luck to you! Having neuropathy in both my hands, I can relate to the pain!

MSNik

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