doctors appt brings about puzzling experience!

[Guest guest]

Went to a new doctor today at University of land neurolology

department. Quite a different experience from Hopkins. First of all,

it was similar to a regular doctors waiting room, did not have to

wait long, doctor came out to greet me and spent a very long time

with me talking, answering questions....He was so kind and treated me

like an intelligent person!

The shocker that i had was that he does not believe i have CMT. Now

for 20 years i have been told i have CMT, so you can imagine my shock

and surprise. He believes i have SMA-spinal muscular atrophy,

although he has not ruled out CMT. The reasons why he thinks this is

i have such muscular weakness and not as much sensory problems. He

said my hip-girdle is extremely atrophied and that is what is making

my walking so difficult. Now i have to go and have blood work taken

to look for the known genetic factors of SMA. Feel like i am back to

the beginning again. Since i have no family history, my diagnosis is

extremely difficult for them to get a handle on. If i do have CMT, it

is one of the rarer forms of it.

I guess i will have to get busy again doing research!

Gretchen, if you know anything specific about SMA, please let me know

or if there is a group similar to this

Regardless of the diagnosis, i still hope to remain an active

participant of this group, because we are all under the same umbrella

of MDA anyway!

Thanks for listening

Perplexed in land

Jackie