MDA appt./AFOS

[Guest guest]

,

Years ago in my 20's, the MDA people wanted to put me in AFOS - I

have had feet/toe problems my whole life. However, good strong legs

then and even now. When the orthotist came out to measure me for

AFOs, I shook my head " no " and got up to leave. I never went back

there. I kept riding horses, swimming and strengthening my legs. Feet

and toes only began to need 'some help' in the 1990's, when I got a

pair of custom made in-shoe orthotic inserts. To this day, that's all

I need and they have really made a difference in how I walk too. If

anyone now told me I needed AFOs, I'd get a 2nd opinion.

Thanks for giving me the feedback about the Quest article. The older

I get the more willing I am to share with others my experiences,

especially if someone can be helped in the process. One of these days

I will add my vacation pictures here - lol - then you can see the

real me - big frizzy hair, Hawaiian shirts, shorts, muddy shoes from

the rainforrest...

~ Gretchen

[Guest guest]

Hi ,

My name is and was just diagnosed with CMT last week. (excuse my

typing, I used to be very good..another CMT kicker!!) I lost feeling to

grab anything right before mother's day..just woke up went to pick up

something and nothing. I went to the ER about 2 hrs later thinking I might

have had a atroke.. The Dr. said it was a radial nerve palsey and his nurse

girlfriend evev had one and I'd be back to normal in 2 or 3 days. It's

been months now and I first went to a chiropractor who said after 3 sessions

a week, I should be back to normal...# weeks later she said it was the worse

case she ever saw in 21 years, which of corse thrilled me, then to the

neurologist, who was a sweetheart..I thought my ins. at work was better than

it is, but she let me pay the 25.00 copay and I had the nerve conduction

test done. After she told me what it was, it all makes sense now...I've had

numb feet for at least 7 years now. I can't tell you if I have socks on or

not and can't wear flip flops(any sandals) because they'll fall off..My

regular dr. has been treating me (I initially had bone spurs..that was

it..then he gave me a shot of cortazone(Ithink that's what it was that set

this whole thing off) I've also been on oxycontin for 2 years now, which

does help alot.. i know it has a bad reputation, but I also have

pancreatitis and this doesn't hurt my stomach..One question for you...my

right hand that went bad (and I am right handed) seems to be getting a

little better. Is that possible??It just used to flop ariund but now I

have more control. Also, the dr wants to get a blood sample, to see if it's

cmt1 cmt2,etc..I'm 44 single and pretty much live day to day...No

money...Can't I just go on like I am and if it get's worse take it from

there??/ I'm very strong headed and believe in " mind over matter " ..Any

suggestions would be geatly appreciated...Is there someway to get my

medicine cheaper, I'm already going to get the booties (slippers) I saw..I

have to decide in the morning if I could hold it in (the peepee) because I

know how bad my feet are..Good thoughts to you and pleasant dreams,