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Old 11-21-2013, 11:33 AM #1
SunnyWalk78 SunnyWalk78 is offline
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Default CMT (Charcot Marie Tooth)

Hello,

I've posted a few times expressing concerns for my symptoms and looking for possible answers. I had my appointment yesterday at the Neuro Muscular Clinic at the University. After multiple testing, reflex test, answering family and medical history questions my Dr has pretty much narrowed it down to possibly having a hereditary diesease called CMT (Charcot MArie Tooth) I met with a genetic counselor yesterday and I'm waiting to get approval from my insurance company to get the testing done.

My symptoms include right Foot drop, with muscle loss and weakness along with left wrist problems with weakness. My symptoms started in 2009 and progressed fairly slowly.

I can still use my right leg/foot and my left hand but not 100%. Sounds like the Dr said there is no treatment for it as of now but physical therapy and exercise along with braces may help.

The genectic counselor stated symptoms can be brought on when a person has many years of repetitive motions like leg crossing and leaning on elbows, sleeping with hands curled and possibly working at a desk for many years. All of those things describe me very well. She also said symptoms can come at any age. She said there are many types of the diesease and the one I have is called HNPP (Hereditary Neurothopy)

I hope this is defiantly confirmed with the testing so I can finally be at ease knowing whats causing all my nerve issues and learn to live with it and prevent further issues if possible.
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Old 11-21-2013, 02:33 PM #2
Kitt Kitt is offline
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Arrow Hnpp

Thanks for your post. Hereditary Neuropathy with libability to Pressure Palsies (HNPP). HNPP is not CMT. Here is a site for it which you might have read. The whole site explains the difference very well. HNPP is caused by a deletion (loss of copy) of PMP 22 on the same chromosome where CMT has a duplication. CMT has an extra copy of PMP 22.

http://www.hnpp.org/

As you describe your symptoms it does sound pretty much like Hereditary Neuropathy with liability to Pressure Palsies (HNPP).
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Old 11-21-2013, 09:19 PM #3
SunnyWalk78 SunnyWalk78 is offline
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Thank you for your response, I was all over the place trying to find information. The genetic counselor I met with referred to it as a type CMT...so now I guess I'm still confused. But I looked at the link you provided and oh my goodness so much information that keeps giving me Ahh Haa moments..wow.
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Old 11-21-2013, 09:31 PM #4
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I hope you can get confirmation from the DNA blood testing.
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