Re: welcome Meryl

[Guest guest]

Meryl:

If you are having problems with doctors, go to the nearest teaching

hospital.

In Philadelphia try http://www.einstein.edu/facilities/index.html

In Baltimore try http://www.hopkinsmedicine.org/

The waits will be just as long, but some of the best doctors in the

profession are supervising these visits. I live in Roanoke VA and had

to travel to Winston Salem NC to see one of the best neuropathy

specialists. In 10 minutes he cut through the babble and hit the

diagnosis on the head. His only error was that further EMG and NCV

findings pointed to Type 1 instead of his initial Type 2 diagnosis.

Teaching hospitals see so many difficult cases that they acquire an

almost genetic memory of complex diagnoses.

-- Larry

[Guest guest]

Welcome Meryl,

I'm seeing a Scherer MD here in Roanoke, a crackerjack

neurologist I met through the MDA clinic. I wonder if he is related?

I'm seeing him on July 10 and will ask.

If so, small world!

-- Larry

[Guest guest]

Meryl,

I know that I am not the first person to welcome you but.....I also hail from

the same area. I have lived in Warrington for the past 11.5 years. I have had

an interesting time with Drs. also and ended up doing the same thing you have

done with the internet.

I did read Gretchens' response about Dr. Scherer in Philadelphia. I have seen

him several times for confirmation of the CMT diagnosis which was CMT 2, not

diagnosised until I was 50 years old as symptoms didn't appear until I was

47/48.

My father also has it but has never been diagnosed....he now feels little to

nothing from the waist down and utilizes a wheelchair to get around. We think

my grandfather (his father)had it and what we thought was a " drunken gait " (he

was an alcholic) could have actually been CMT.

Dr. Scherer wanted me to bring my father down to see him but that is next to

impossible for me to do. He lives at the VA facility in Lyons, NJ, has great

difficulity " helping " , has gained at least 25-30 lbs since he has started using

a wheelchair, has no bladder control anymore.....I figure that doesn't make for

a pleasant trip anywhere.

I find that I fatigue more quickly now, in the past year have started having an

issue with my left knee (it swells and hurts but there is nothing wrong with

it...they want to shoot it with cortisone but there is nothing wrong with it!!)

Have you ever signed up with the MDA in the Delaware Valley? They helped me to

afford seeing Dr. Scherer, my insurance pays for whatever and they pay for the

rest. There is also a support group that meets accross the street from the U of

PA....the person that " runs " it belongs to this group.....I cannot remember

namesanymore and have never attended physically but mentally I go every month.

My goodness where did all the above come from.....welcome to the group, you will

learn much and make lots of new friends both in the USA and abroad.....please

feel free to write at my email anytime.

Welcome!!!

Sharon