CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD

Posted by GreenGrandma @greengrandma, Feb 4, 2012

It started out w restless leg syndrome, then my feet started burning as I sat at my desk @ work. It got so intense that I could not be in sitting position 5 minutes. Finally had to go to bed 24/7 for 2 years except to pee about 8 times a day. I do not suggest that you do that as your muscles can atrophy. I could still walk but I lost my fluidity of motion, nothing has brought that back. I prayed daily to die, because of God, I never tried to take my life. I now go to a pain therapist. It took about 11 years, to diagnose CMT. (5 yrs. ago) I have gone through hell and back. Physical therapies, paralysis, foot deformities, 11 corrective surgeries but Life is worth living after all. Hope 2 Help!

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Do you know which type of CMT2 you have?

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In reply to @judy1812 "no" + (show)
@judy1812

Welcome @judy1812, Did you mean no, you don't know which type CMT2 you have? Have you been diagnosed with Charcot Marie Tooth Disease Type 2?

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Yes, I was diagnosed with CMT2 recently. I don't know anything about types.

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@judy1812

Yes, I was diagnosed with CMT2 recently. I don't know anything about types.

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Here is an article that talks about CMT2 and might help you learn more — Charcot-Marie-Tooth Disease Type 2 (CMT2): https://charcot-marie-toothnews.com/charcot-marie-tooth-type-2-cmt2/. You might also find the CMT Research Foundation site helpful – https://cmtrf.org/.

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Thanks for providing this information. It is a little difficult to wade through for someone without a medical background, but one thing stood out to me. My neurologist mentioned a loss of myelin. I have had trigeminal neuralgia for several years which is also a loss of myelin. I am assuming I inherited it from my father who had similar symptoms. Back in the '80s they called it "old age". My symptoms became noticeable in my 70's: unsteady gait, poor balance, loss of sensation in feet, hammer toes, high arches, weak wrists and ankles, trouble hanging onto things. I am assuming I have CMT2I.

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@ajp2019

Looks like there is a definitive test:
Found this:-We report a 14-month-old toddler. The child presented with symptoms such as unsteadiness and ataxic gait along with decreased motor and sensory action potentials of the limbs. As the father of the child was diagnosed with Charcot-Marie-Tooth 1A disease, a genetic analysis of the PMP22 GENE was performed confirming the diagnosis of Charcot- Marie-Tooth 1A in the child, too.
This case underscores the significance of an appropriate neurological assessment.

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My Daughter was diagnosed with the same at 6 years old

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@judy1812

Thanks for providing this information. It is a little difficult to wade through for someone without a medical background, but one thing stood out to me. My neurologist mentioned a loss of myelin. I have had trigeminal neuralgia for several years which is also a loss of myelin. I am assuming I inherited it from my father who had similar symptoms. Back in the '80s they called it "old age". My symptoms became noticeable in my 70's: unsteady gait, poor balance, loss of sensation in feet, hammer toes, high arches, weak wrists and ankles, trouble hanging onto things. I am assuming I have CMT2I.

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I am thinking my loss of myelin sheath is due to my involvement with autoimmune diseases.

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@leonaruehmann

My Daughter was diagnosed with the same at 6 years old

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How old is your daughter now, @leonaruehmann ? How is she doing?

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@colleenyoung

How old is your daughter now, @leonaruehmann ? How is she doing?

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She is 25

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In reply to @leonaruehmann "She is 25" + (show)
@leonaruehmann

How is she doing now?

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