Don't know what to think anymore

January 21, 2006

Bobbie,

Ah gees, this is awful...I really feel for you. I just wonder what

the he** " traditional " CMT is anyway. Used to be CMT 1 and CMT 2 -

that was it, end of story, and the two were easily discernable to

TRAINED professionals - way before so much testing and the advent of

the MRI, DNA tests, etc. The way I was originally was diagnosed

was " simply " CMT. No type, no mention of it even being HEREDITARY,

not even a mention of it as a BIRTH DEFECT that later came out in the

1960's.

After reading so much about CMT and knowing of ALL the different

types associated with different genes and their different mutations,

I am just pre-supposing there really is NOTHING like " traditional "

CMT anymore - but that is what the docs books have in them - CMT is

this, Type 1 is this, Type 2 is this, Type X is this.

In our Files section, there is a short paper by CMT expert Greg

, MD, on the difference between CMT, MS and MD. This may not

necessarily help you, but perhaps you might wish to print it off for

your doctor.

Sometimes I feel doctors (especially new ones we see) want to test us

again - just to see what we have. At least this is my experience. I

last saw a neuro in 2001 simply to find out if my back problems were

due to CMT. He said " no " , and then wanted to test me for RA. I

said " no " , and was on my way to a spinal orthopedist who correctly

diagnosed my back problems and came up with a lasting soulution.

Neurologists have their place, but even with the courses they take,

very few are ever trained properly in " peripheral neuropathies " , let

alone trained in exact diagnosis of CMT, etc.

I hope you stick with us to help see you through this time of

uncertainty. (If it is any consolation, even AFTER I had my first CMT

diagnosis, I also was thought to have MD, MS, FA, RA, etc. ALL were

eventually ruled completely out and the last neuro I saw prior to

2001 was 1999 and he was the guy who did the EMG who said my results

were normal with reinnervation which is indicative of Type 2)

~ Gretchen

Recommended Posts