Re: Well, it looks like I don't have CMT

[Guest guest]

:

It might be Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).

The symptoms mimic CMT with one differential diagnosis being increased

CSF protein levels over that found in CMT. CIDP is treatable. Here is

a link: http://www.cidpusa.org

-- Larry

[Guest guest]

Thanks Gretchen and . I'll be sure to let the group know what

the final outcome is...

I really feel that I need a name put to it to be able to accept it

and move on. Also, I think it's good to know what's going on in case

some new treatments or information come out in the future.

[Guest guest]

,

I've always wanted to call it Deb's Cry....I was always in so much pain and

crying alot and nobody seemed to understand. I've gained alot of knowledge from

this group and learned to take the pain with the

gain. The Marines (whom my oldest son is in) have a motto, No Pain, No Gain.

Good Luck in finding the answers.

Debbie

[Guest guest]

CIDP was brought up by a neurologist but my EMG eliminates it. My

neuropathy is Axonal in nature and CIDP is a myelin disorder.

Another interesting thing is that according to the MDA Neurologist, my

neuropathy is " not that bad " ...my muscles are much worse than they

should be based on the EMG. My muscle enzymes were very

bad...according to her, normal levels of Creatine are about

150 and mine were in the 900's.

She took blood to test for SMA and Kenedy's disease. I'm not sure

about that either...I looked up the symptoms and it doesn't quite

match...it going to be a long journey I guess.

I appreciate everyone's help and input and I hope my story will help

you all in some way...

[Guest guest]

Larry,

Thank you for the link and information. This is just fascinating. I

copied a little bit of the article for anyone that missed the link.

" Patients who carry a diagnosis of Post Polio syndrome will benefit from IVIg as

they usually have CIDP. Currently there are case reports that IVIg has even

helped patients with C.M.T disease, lumbar and brachial neuritis, transverse

Myelitis. Diabetic Amyotrophy is considered to be a vasculitis and is responsive

to IVIg.

[Guest guest]

Hi ,

I don't think they can find CMT in a blood test, unless you are having some sort

of genetic test and that only looks for some types of CMT where the specific

gene marker is known.

I would suggest finding an expert in CMT, not just any neuro, bringing your

files, and seeing what is said to you. With so many confirmations, one no, and

a lot of doubt, it may help to see a true expert.

Best wishes from London,

Donna

[Guest guest]

,

What Larry said triggered something for me. When I said CMT does not show up in

the blood, that is what my CMT experienced neuro said, and my nutritionist also

remarked that unlike other neurological diseases my blood tests were on the

money in all categories so no sign through blood of CMT.

My neuro and nutritionist remarked that there are higher protein levels in blood

of patients with other neurological issues, and they especially cited CIPD and

MS.

Now I don't mean for my comment to freak you out, but again it may be worth

getting a copy of that blood work up and also other files with your EMGs and

going to a real expert. Gretchen is great with tips on how to find names and I

don't know where you live but this list seems great at people helping each other

out with names of docs in the areas they live in too.

I know that sometimes we want to know what is wrong with us to feel a sense of

moving on and to get a better feeling of control - knowledge is power and all

that. But I really like what Gretchen said, which is that sometimes but just

learning more about our own bodies and needs and capabilities and being really

in tune with ourselves, the diagnosis or name of what we have is less important.

I like to encourage my friends, whatever their issues, to try to

better understand what makes them tick to see what they can do to manage the

highs and lows of life.

One way I have done this with trying to understand CMT and how it impacts me is

to be really aware of what I eat and what I do and how that impacts my energy

levels and general sense of well being. I

know I can't control my genetics, but when I keep in touch with myself I feel

that I can manage myself and my well being better. That may be an alternative

to do while you seek to put a name to what is making you feel this way.

I hope this makes sense. We are here for you, and anytime you wanna drop me an

email feel free,

Best wishes from London,

Donna

[Guest guest]

Donna,

The (latest) neurologist I'm seeing is the director of Neurosciences

at the MDA clinic in Newark NJ. I would think that she could be

considered an expert (if not in CMT specicially) in neuromuscuar

diseases. She made the determination that it's most ikely not CMT

based on my EMG and an examination so she decided to do bloodwork to

eliminate other conditions before doing the expensive gentetic CMT

test.

This experience has definitly taught me to take whatever doctors say

with a grain of salt, so if I feel like she's barking up the wrong

tree or I lose confidence, I won't hesitate for a second to " fire "

her...Her name is DR. s BTW...

If anyone knows of a true CMT expert anywhere in the US, please let

me know...I'm determined to get an answers and will jump on a plane

if necessary.

[Guest guest]

Hi ,

I live in the Florida Keys and have THE BEST neurologist for the last three

years or so. She knew what I had after I had been to all types of doctors

before her. Yes, she's a her. My other doctor wants her to work for the

gov/t. Long story. Anyway, it's funny, I was born in Newark.

[Guest guest]

it is funny i went to drs, all male, and after 15 mins or so with a female doc,

she said CMT. i had never heard of it but with the loss of feeling, leg hair,

balance, the pain she nailed it after 15 yrs of " in your head and life style " .

mike in Texas