Re: Double Joints

[Guest guest]

Donna, I read your post with some excitement. I thought my family was

the only one who had had a collision of these two genetic disorders.

I have often wondered how we managed to be so lucky. I have not been

tested for Ehlers Danlos type III (aka Benign Hypermobile Joint

disorder) but based on the clinical criteria it fit perfectly for my

family, especially on my mother's side. It didn't account for

everything, though so I kept up my research on inherited disorders

that caused such things as prolonged numbness, fasciculations,

weakness, etc (you know the drill) and had self diagnosed HNPP. I

took that info to a neurologist who sent blood off to Athenia and

what do you know, CMT was diagnosed. The symptoms for CMT are classic and run

rampant in my fathers side of the family.

I have always been " double jointed " and my sisters and I have always

delighted our classmates with cool parlor tricks like intentionally

dislocating a shoulder, putting arms behind us, one up and one down

and being able to grasp opposite elbows, etc. My mom and daughter can

do this too. My nephew can stand on his hands and toss his knees over

his shoulders with his feet out in front of his face. At age 21 I

traumatically dislocated one shoulder, then the other and have had

joints that won't stay where they belong ever since. One of my

biggest problems lately (at the age of 43) is that I'm having

weakness and numbness in hands and feet and bump a finger or toe and

cause it to sublux -- goes out of joint then back in. The sliding

joints in my shoulders keep rubbing on the nerves supplying the rest

of my arms causing all sorts of parasthesias and neurogenic pain.

I'm pretty tough and quite strong but feel like if I'm tweaked in just the right

way I'll fall apart. Last year I dislocated a tendon in my ankle while walking

straight ahead. I attribute it to the crazy loose joints coupled with the lack

of sensation that something was wrong so I kept moving until it exploded.

Sure makes life exciting. Thanks for letting me know that there are

others who have CMT and Ehlers Danlos. Anyone else out there? Wonder

if they could be linked or perhaps both are just failry common but

since they have variable penetrance not well known. There may be more collisions

like this out there. Please chime in if we're not alone.

(Incidentally, Donna, my ancestry goes back to Suffolk County,

England, the rest from Northern and Western Europe, seems like at

least the CMT is fairly common in the UK.)

Holli

Topanga, CA