CMT and CIDP

[Guest guest]

,

Interesting. People with confirmed CMT will not get any help

or 'treatment' from the IVIg, which is why I had asked the question

in the first place. I watch academic research daily and it sure

would be great if persons with CMT would 'respond' to IVIg.

Another thing you mentioned was pain in joints. As long as I've had

CMT (just about my whole life) I have not experienced any joint pain -

just that which can come from muscle spasms or cramping, or also the

burning feet pain. And that lumbar puncture you mentioned (spinal

tap) oh - there IS something worse that the EMG/NCV! Never again, and

still resulted in another 'normal' test for me.

I have to admit the best 'treatment' I have found is nutrition, diet,

exercise (aerobic and core strength building and the breathing that

goes along with it) combined with plenty of time for meditation, work

I love, Vitamin E, and more recently a Vitamin B complex and good

quality of sleep. OK and I will add here my custom made orthotics, my

terrier Wiggles, my friends, and my partner, all of which keeps me

emotionally gounded, happy and at peace.

I remember the summer I was diagnosed and had foot surgery, 1962,

shortly after I turned 10. I am about to turn 54 and looking back at

that little girl, who was so afraid of whatever CMT was and all of

the whispers docs and my parents made so I couldn't hear. Living a

life with CMT has been rocky at times, but there has been so much joy

and so many great adventures, places I've seen, things I've done,

jobs I've held. That scared 10 year old grew into one heck of a self-

assured woman and I'm proud of it! Sorry to ramble, just getting a

big philosophical as another birthday approaches

~ Gretchen

~ Gretchen