Re: CMT AND ALS

[Guest guest]

When I went in for weird symptoms about ten years ago (I am now 52) the

neuro at the time thought I might have ALS! Not what one wants to here to say

the least. After much testing, I was given a dx of MS which I carried for

three years. I went in for more testing when I was suspected of having had an

ischemic attack (mini stroke) but it turned out that I hadn't. THEN I went to

another neuro here in San Diego, and she confirmed CMT...NOT MS. I had taken

daily injections for three years for nothing!

Go to another neuro but do not accept an ALS diagnosis without concrete

evidence. AND do not notify your insurance carrier yet. Even though I do not

have MS and never did, I still get dinged with insurance because of that dx.

Best of luck!

Karon

[Guest guest]

Thanks Karon,

We are actually in the process of going to the MDA clinic sometime

next week and have actually been told we may have to go to Mayo Clinic

in Minnesota. Doctors here have told my husband to take pictures of

his dad's hand and fingers and legs so doctors there can look and see

if there is something hereditary going on such as CMT. We can only

hope. I know CMT is not easy to live with but is better than ALS,

which is always fatal. Thanks and best of luck to you also.

a

[Guest guest]

Hi,

This is my first post.  I just wanted to assure a that there are many, many

of us CMT'ers who do not fit the current genetic profiles that positively ID

CMT.  I think there are a huge number of variations yet to be " discovered. " . 

Since your father-in-law has similar problems as your husband, hopefully, that's

a sign that it's not ALS.  My husband's best friend has ALS so I have learned a

lot about it.  Sure hope he has CMT!