How long did it take for you to be di... - Charcot-Marie-Too...
How long did it take for you to be diagnosed with CMT
I was diagnosed aged around 5 after my Dad suspecting something. From speaking to my Dad, it took around a year to diagnose. At that point I was diagnosed with CMT Type 1 but testing for subtype was not pursued (as not really needed)... since then I have had further blood tests and been formally diagnosed with type 1A.
I kept going to the docs and was fobbed off for 4yrs. It wasn't until i had a fall and hurt my foot which took ages to heal, that a physiotherapist refered me on to neurologist, then took about 18months to get the diagnosis.
I was 34 by this point. My youngets daughter has had problems since baby, but nobody ever mentioned CMT, she was tested at 8yrs old, simple blood test as I couldn't put her through painful tests I had. The result came back positive, although I anticipated it would it still was heart breaking knowing I had passed on these genes. My eldest daughter choose to be tested herself at 19yrs old, that too has come back positive. fingers and toes crossed that my grandchildren are not effected.
My father died after suffering misdiagnosis for 30 years. I first went to a doctor about numb feet in 1973 and was finally diagnosed in 2008. My sister was put on the right track by a reflexologist about the same time, after having to take early retirement as she was no longer safe working as a dance teacher. Why are GPs not trained to recognise or at least refer something they cannot place?
Moderation team
