diagnosis: to Jim

[Guest guest]

I don't know if this is the time or place to be bringing this up,

or if I even have a right to be a part of this group anymore, but

here goes: Up until 2 months ago, I thought I had CMT for the

last 6 years. I have all the classic symptoms, weak hands, weak

legs, severe balance problems, difficulty maneuvering in the dark,

toe drop, I require AFOs, etc. My regular neurologist felt there

might be " something else " going on when I saw him last spring, so

he referred me to Mayo Clinic in Rochester,MN. I spent 6 days

there in August in the neurology department. My diagnosis of CMT

was dismissed the first day, and it took a team of several doctors,

and excruciating tests including a muscle and sural nerve biopsy,

to come up with a dx of a very rare disorder called " Distal

Predominant Motor Neuronopathy " . It is close to Lou Gehrig's

Disease (ALS), but not fatal. It is progressive, and I was told I

will definitely lose my ability to walk, that I must keep myself

thin, exercise, get pneumonia and flu shots, and do whatever

possible to keep Diabetes away. The doctors want me to be in

otherwise optimum health. I know I must try. But, I do hope

Gretchen will allow me to continue to participate here. We share

many of the same symptoms, it's just that the prognosis may be

different. There is no support group for Motor Neuron Disease

(except ALS) that I can find. I've learned a lot from this group

and have gotten much support, especially when trying to decide if

AFOs were right for me, and when I needed emotional support before

I agreed to have my biopsies. I do hope that I have given back in

some beneficial way. In conclusion, perhaps if you're not sure

that you have CMT, maybe it isn't CMT at all. Maybe it's something

worse, or maybe it's something not as bad. It doesn't hurt to

explore other possibilities. If it turns out to be something else

like it did for me, it's good for you to know what it is. Who

knows? There might be a treatment for it!

Thanks,