Charcot-Marie-Tooth Disease Support Group
Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy) that is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease.
Hello everyone. I'm new to this group and hope to offer any advice or support to anyone suffering with Charcot Marie Tooth like myself. The Muscular Dystrophy Association has been very helpful with medical treatments but it's difficult in more ways than just physically. Thanks for having this group!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I've pretended not to need any support, but I think I've reached that point where it's comforting knowing that others are dealing with the same issues. When were you diagnosed?
I was diagnosed about a year ago, and misdiagnosed my whole life. Started with my grandmother, down to my father and then to me. It is comforting to talk to people about it, or at least to read that others are as frustrated as you. CMT and the pain and symptoms have been so much worse for me over the past two years - it's exhausting.
Good to meet you!
May I ask, what were you misdiagnosed with?
I know what you mean about the pain and the exhaustion. CMT has always been there in my life as well. I began falling down when I was about 8, and was diagnosed at 11. I'm lucky in that where I live is close to Ohio State University, where there is a wonderful MD clinic.
Now that you know the proper diagnoses, is it any comfort?
Once, a Harvard educated doctor felt my cold, purple foot and put a stethoscope on it. Even though it is deformed, he said, "there's a pulse. Everything seems fine to me!"
All doctors have said they don't know what it is and what was causing my pain, discomfort, and deformed foot. It was pretty amazing.
There was a periodic comfort in giving the disease a name. After being forced to resign at two jobs, however, and receiving no understanding from employees along with a bit of harassment, I was forced to face what it means for me and I am in a mourning period now.
What do you do?
of Dogma that people cling to because it affords simple answers to
complex problems ....and denys the possibility that any tradgedy
will befall the subscriber. You, however know your value is just as
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you are at the head of the class. With this wisdom and a little persistence I am sure you will find more than a job but a very meaningful
career that will be of great benefit to others.