NeuroTalk Support Groups - new to forum please help

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new to forum please help

I am 41 years old just diagnosed with sensory-motor nueropathy. It started in my right foot a couple of years ago, now it is in my left foot and both legs. The doctor has listed it for now as idiopathic. I have absent dtr's in both ankles, ncv showed no response for the right peroneal for senory or motor functions, n/r for the left peroneal sensory. There is slow response for the left postieror tibal, absent f-wave for the right peroneal and prolonged responses for the rest on the f-waves. and the list goes on. does anyone have any suggestions?

Quote:

Originally Posted by lynn01 (Post 696941)

It would help if we knew what testing you have had done. Have you been tested for autoimmune issues, etc. Also have you seen a neuro specializing in neuropathy?

Silverlady

Have you been tested for a hereditary neuropathy?

Silverlady......oh where have you been??:hug::hug::hug: So glad to see you back!

Also....lynn....I hope they have exhausted all tests before they proclaimed you idiopathic....it sounds like some profoundly abnormal nerve testing.....many of us with SFN have normal nerve conduction studies.

Quote:

Originally Posted by Kitt (Post 700778)

Have you been tested for a hereditary neuropathy?

Kitt how do they test for hereditary neuropathy, I have suggested this frequently and keep being dismissed, I have been diagnose with ideopathy SFPN but my dad had neuropathy and I am sure my grandmother also although it obviously wasn't diagnosed in her lifetime. Is the testing expensive and that is why I am being fobbed off?

Quote:

Originally Posted by malawigirl08 (Post 700880)

DNA blood testing with Athena Diagnostics. It is very expensive depending how much they have to test for. For CMT there are like 20+ types that they can test for. Hopefully, they can rule it in or out.

http://www.athenadiagnostics.com/content/index.jsp

They do many other DNA blood testing for other types of diseases.

A good neurologist, for example, who knows CMT very well can help a lot where that is concerned. They can have EMG/NCV testing done. Family history could enter into the picture as well. A thorough examination, etc. There are many signs and symptoms for it. And symptoms of CMT are not the same for people even within the same family.

http://www.charcot-marie-tooth.org/a...t/symptoms.php

These are not cut and dried either.

But, again DNA blood testing is very expensive. You really would have to read any kind of paperwork thoroughly before you sign it. Be certain that you understand it all.

I have not had DNA blood testing and do not plan to as I know that I have CMT. It's in my family from way back. I know the type from an EMG/NCV but the subtype is what I would find out with DNA blood testing. There is no need at this point as there is no cure/treatment for any type of CMT. This is just an example that I am giving.

There is more information on CMT by me in the "PN Tips, etc." at the top of the PN forum.

Not certain that this helps or not. I hope you find an answer.

Kitt,

Does CMT or hereditary neuropathy usually show up with abnormal nerve conduction or abnormal emg?

Quote:

Originally Posted by cyclelops (Post 701186)

Kitt,

Does CMT or hereditary neuropathy usually show up with abnormal nerve conduction or abnormal emg?

Maybe this will help. It is specific to CMT which is hereditary. There can be mutations but they are rare.

http://www.charcot-marie-tooth.org/about_cmt/causes.php