Peripheral neuropathy with no "real" diagnosis...

Posted by kingrach78 @kingrach78, Oct 6, 2012

I have been had tingling in my hands and feet for about a month now. The tingling and numbness started in my hands and feet and now goes up my arms and legs.

I’ve had MRI’s of the head and cervical spine and a spinal tap, and all have come back normal. My blood test also came back normal. Initially, my neurologist said it’s likely a mild form of myelitis. This made sense to me, as my research indicates I have symptoms consistent with myelitis. Last week, he brought his colleague in to also evaluate me, and he now thinks it’s not myelitis. I also have terrible night sweats, but those have been going on for quite a while now and no one (including myself) thinks they are related to my recent symptoms of tingling and numbness.

I’m really frustrated with the lack of diagnosis. I’m going in on Tuesday for nerve conduction studies. I’m considering going to The Mayo Clinic, but am wondering what else they could do.

Any advice would be greatly appreciated.

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I have the same diagnosis. I have tried PT. It helped. I continue to exercise. I exercise my toes and wrist. Avoid lifting heavy stuffs. I refuse to take pain killer. Try alternative medicine. Feel well!

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i have mortons neuromas on my feet.have tried injections-no avail. now my doctor wants to remove the nerves in my feet. wonder if snyone has had this and results?

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Hello, I was hoping to get and update on you and your condition. I I hope you are doing much better.! My husband has been going through the same thing. We have been dealing with this since 2/2013, he has had a ton of blood test (all normal), nerve test (all normal), 5 MRI’s (all normal), and the latest the spnal tap (normal). The neurologist herself told us to get a second opinion. When she told us that he had Transverse Myelitis, she said that the damage/symptoms are irreversible and that progression to paralysis is a possibility. So with that being said the Dr. is wanting us to get a 2nd opinion because all the causes of TM have come back negative. I was just hoping that you maybe your experiences could lead us in the next direction.

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@ccsmith

Hello, I was hoping to get and update on you and your condition. I I hope you are doing much better.! My husband has been going through the same thing. We have been dealing with this since 2/2013, he has had a ton of blood test (all normal), nerve test (all normal), 5 MRI’s (all normal), and the latest the spnal tap (normal). The neurologist herself told us to get a second opinion. When she told us that he had Transverse Myelitis, she said that the damage/symptoms are irreversible and that progression to paralysis is a possibility. So with that being said the Dr. is wanting us to get a 2nd opinion because all the causes of TM have come back negative. I was just hoping that you maybe your experiences could lead us in the next direction.

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Hi,its been a long time since anyone has been on this. I was wondering if anyone found out what was wrong with them, because i have been numb since May of 2013 ?

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@ccsmith

Hello, I was hoping to get and update on you and your condition. I I hope you are doing much better.! My husband has been going through the same thing. We have been dealing with this since 2/2013, he has had a ton of blood test (all normal), nerve test (all normal), 5 MRI’s (all normal), and the latest the spnal tap (normal). The neurologist herself told us to get a second opinion. When she told us that he had Transverse Myelitis, she said that the damage/symptoms are irreversible and that progression to paralysis is a possibility. So with that being said the Dr. is wanting us to get a 2nd opinion because all the causes of TM have come back negative. I was just hoping that you maybe your experiences could lead us in the next direction.

Jump to this post

Hi @1215joann. Here is some information about peripheral neuropathy that you may find helpful: http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/definition/con-20019948.

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@ccsmith

Hello, I was hoping to get and update on you and your condition. I I hope you are doing much better.! My husband has been going through the same thing. We have been dealing with this since 2/2013, he has had a ton of blood test (all normal), nerve test (all normal), 5 MRI’s (all normal), and the latest the spnal tap (normal). The neurologist herself told us to get a second opinion. When she told us that he had Transverse Myelitis, she said that the damage/symptoms are irreversible and that progression to paralysis is a possibility. So with that being said the Dr. is wanting us to get a 2nd opinion because all the causes of TM have come back negative. I was just hoping that you maybe your experiences could lead us in the next direction.

Jump to this post

Thank you for the information it was very helpful.
Jo Ann

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