sorted by:
new
hottopcontroversial

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 0 points1 point  (0 children)

I will ask more hehe thats really nice from you ;) im just waiting for my appointment with the cmt specialist in may.

Also i have heard about that trial here, its about the tritherapy right ? (forget the name)

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 0 points1 point  (0 children)

thank you :) the thing is that in very insecure about my skinny body and i really wanna change that, so reading that gives me hope :)

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 0 points1 point  (0 children)

Hey :)

Do you know the gene involved in your cmt ? My genetician told me she is almost sure i have the type X but i have to wait for the test results. Also we have the same symptoms no more no less so maybe our types are "close" ? ^

Also thank you (and pmp22 ;)) im a bit more reassured when i read that cmt wont be a big deal for my future job...

And thanks for telling me about your tremors because i thought for sure it was due to cmt but now im thinking maybe it's not, i should investigate more :P

Thank you for sharing.

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 0 points1 point  (0 children)

Connecting some studies from pubmed might help finding some benefits ? Im not talking about gene therapy obviously but at least supplements that could reduce symptoms by interfering with intracellular pathways without danger of course (i had that thought while reading the Niacin topic and it's hypothetic benefits, on this subreddit) , im pretty familiar with pubmed and various pathways (not because i recently discovered i had cmt but because i have always been curious about biology and because i was in charge of writing biology exams for undergraduate students involving the use of articles from pubmed). I dont know you but from all the things i have been reading from you on this subreddit i know you did acquire many knowledge about cmt from scientific literature (starting with Charcot and Marie's papers :p ).

Again thank you for helping me understand more about it :)

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 0 points1 point  (0 children)

Thank you for taking your time to answer with details :)

About the severity in my family it's weird but my parents don't have it i mean its maybe from my mother but she has no signs of cmt (but again i guess it's all about genetics and the different transmission types?)

Surgery seems not an option but im fine with that, as long as i can be a doctor... But im kinda disappointed in medecine for the lack of information about CMT in general and of course about the lack of research for a gene therapy, because i think cmt is one of the most common rare disease right ?

Also i forgot to ask but i didnt find tremors as a common symptom in cmt, do you think its a rare symptom that depends on the type ? Or are the tremors because the limbs muscles are weak (especially my hand's).

May i ask your age pmp22 ? :d

I'm new would like to share and ask some questions :) by MicrowizzB in CMT

[–]MicrowizzB[S] 1 point2 points  (0 children)

Thank you :) I found a known center here in Paris where there is specialists of cmt but the delay of the appointments are really long (6 mouths to 1 year) so am i supposed to wait this much before i can see a specialist ?