Frustrating: Frustrating I'm still... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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Frustrating

Ally7411 profile image
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Frustrating

I'm still waiting for my daughter and my Genetic test results after 12 months I am from a large cmt1c family and we have late onset ? MY daughter who is 7 has toe walked her entire life The rest of My family are taking insulin.pes cavus avd foot deformaties all of us have absent Achilles tendon reflexes my concern is that nothing has been done as a unknown gene mutatio Of whatever IT is my daughter is getting wurse No treatment whatsoever I think they are more interested I'N the gene mutation than any of us

I think the Dr had had results for sometime and has not told Me Anythingi not even about my EMG nct showing slow sensory amplitude from knees down 38ms I have very little feeling in both feet they have pins and needles in them daily and ache Only when i sit down

How long do we have to wait ? Till they find more info on the unknown gene ?

What a Joke !!

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