Charcot Marie Tooth Diagnosis Confirmed

[olfjohnsmithgolf]

Well i went to my third neuro who is a specialist at UCSF neuromuscular center in SF> Guess what. After a long check up and a bunch of little strength tests. he took one look at my skinny legs and high arches and flat footed walk and the twitching of the limbs only and said i have a mild case of CHARCOT MARIE TOOTH SYNDROME. Well at least i know i have something but just like BFS there isnt anything they can do. so here i am stuck with the twitches and slowly losing strength in my legs. Anyway i dont know if some of you people might have this it took the third different neuro to come up with this. I do believe him because i have the symptoms. he also could tell by the past 2 CLEAN EMGS. clean meaning no ALS or MS but definitely something wrong he said. sorry i couldnt have better news about stopping our twitching but i tried. just because you have a clean EMG for ALS or MS doesnt mean u dont have something else. SHOOOOOOOOOOOOOOT

 

[eyennyGlimmer]

Sanfordsg,

I am sorry to hear about the dx. I was just reading up on this. I just had a couple of questions for you. Wouldnt the shocking part of an EMG pick this up since it is a progressive neuropathy? Also, what did you mean by high arches, I know what you mean but what does that have to do with charcot tooth?

So what do you think, other Dr.'s have said BFS and now you have this one that says something else? I am sure you are frustrated. I will keep you in my prayers...God Bless..Jenn

 

[SharonSmoove]

Hi,

I'm really sorry to hear this. I would be interested to know how it was diagnosed other than the atrophy. I hope you maintain your health for as long as possible, can they do anything to help you??.

Regards
Sharon

 

[olfjohnsmithgolf]

its all good thanks for your concern. i have apparantly had this for 20 years or more. I have a mild case. I might just start to lose some strength in my legs and hands as i get older. I am more bothered by the twitching. this sy ndrome hasnt stopped me from anything. i ski, ride irt bikes, golf, bowl, play softbal, basketball. just finally figured out why i walk flat footed and could never stand on my toes