Hello

[Guest guest]

Hello everybody, especially you who are new!

My name is Rose-Marie (Rose) and I´m now 40. I live in Sweden with my 2

boys (8, 12). We all have CMT1 and me and my oldest boy Pierre got our

diagnose 1993 (when I was 33 and Pierre 6).

At that time we didn´t think that the little boy; Patric, had got CMT. He

was as strong as yo can expect and walked good with straight feet and

head. When he was 3-4 he began to walk with his toes together and got

problems with coordinating his feet and hands when climbing (than we

new...). Now his main problem is his stomach; he has pains, are feeling

sick and sometime he vomits (this has been going on for 3 years now). The

problems can maybe depend on that his autonomic nervous system also is

effected by CMT so the emptying of the colon/intestines are too slow. He

is now eating a med. for that;. " Prepulsid " . He is much better now and

don´t feel so sick anymore but unfortunatly he sometimes is very tired and

exhausted. Last year he enjoyed to participate in the gym.classes but not

anymore. Well well...

When I was younger and before I got pregnant I also used to bike very

much. Me and friends went by bike on our hollidays to different places. We

biked ca 30-40 kilometers every day. I had no problems to follow my

friends. But nowadays I only can bike shorter distances as it takes so

long for my legs to recover. If I bike 10 km my legs feel like dead logs

which I am supposed to drag around with all day long. I`m am happy though

that I still can enjoy biking even if onlys shorter distances.

About flu, I really have that now. Me and my doc. talked about if I should

have one flu.injection last year because I get so exhausted for a long

time after a flu. Guess I have to think it over once again.

Have a great sunday you all, Rose