Re: IVIG and question

[Guest guest]

My husband's first doctor said that if Jim had CMT, he couldn't cure him, so he

would try all the treatments for auto-immune diseases in the hopes Jim had one

of them instead of CMT. IVIG was one of the treatment he tried. It does

nothing for CMT.

After several treatments Jim had an anaphylactic shock from it. That was fun.

Beta interferon was the treatment that really made

him feel sick for several hours each time. None of the treatments worked, so

we were left with the obvious CMT diagnosis. My husband's gene tests were

negative. Bill, you might have the gene tests before you go through a lot of

treatment that won't work if you have CMT 1A.

I have a question for everyone. Jim was 59 when he was first had symptoms and

60 when he was diagnosed. Now I look at my 48 year old stepson's feet and I

see the obvious CMT look: hammer toes, extra-high arch, small feet. They look

just like Jim's did before he was diagnosed. Is there any reason to point this

out to his son? Is there anyway knowing ahead he probably will suffer from CMT

would enable him to improve his future? He is going through an ugly divorce;

his kids are 15 and 9.

Elinor

[Guest guest]

Hi Elinor,

About your stepson. I guess I would say it's a personal decision on whether

to point out the CMT like symptoms to him. He may have the same kind of

" look " in his feet but may never experience any pain or other symptoms related

to

CMT. It affects everyone differently. I have hammertoes, very high arches,

but I do not have small feet. Not in the least. However, I am the only one in

my family with feet trouble. I guess it would be good for your stepson to

know the facts of CMT in case he ever does start to have trouble. It's a

discussion that you and your husband would have to talk over and find out if his

son

wants to know about it. I think knowing about what his father has and the

symptoms is something he should learn about.

Good luck with your decision.

Elaina/NY