Welcome Jan/doctors

[Guest guest]

Welcome Jan,

I have had CMT just about my whole life. I have one doctor whom I

completely trust and respect, my orthopedist. We developed a good

relationship over a 2 year period, and then I had back surgery. He is

a professional, well-trained, knew of CMT but it wasn't an issue. I

got great care and had a great recovery. Ever since I ask him for

referrals if I need one. He knows who is professional and who's not

(I live in a small town, but have access to a mid-size city about 45

minutes away) I completely trust my orthopedist and have nothing but

sincere respect for him and medical care for me.

I don't waste time with stupidity. With ignorance, I try to educate,

I have printed tons of CMT info for docs, but if they don't read it,

forget it. Long story short, I know more about me and my CMT than

docs do. I also don't waste time with PA's unless all I need is a

medication refill.

Even with new doctors, I check into their background first. The fewer

doctors I see, the better off I am.

Regarding CMT fatigue, this is how it was explained to me: CMT

muscles have to work twice as hard to do half the work of a non-CMT

affected person. Think about that. Of course there's fatigue! You

sound very busy and active so perhaps some rest is a good idea. I

know first hand caregiving for an elderly parent is a huge stressor.

Stressful events can sometimes adversely affect our CMT.

As for neurologists, have you considered a MDA clinic, where CMT is

known? Since you are having the SSA review, might be a good idea.

One thing about talking to doctors I have learned is to establish eye

contact when I am talking and when they are talking. I told one

goofball to trash his palm pilot and LOOK AT ME when I am speaking to

him!

I have dropped all expectations from doctors, even the great

orthopedist. It seems we can meet in the middle somewhere and better

discuss my needs.

Back to the fatigue a sec - read over our information and posts on

Vitamin C. A side effect of C has proved to be less fatigue, more

energy!

I'm not certain about your immediate locale, but here's a link to

Penn State Neurology - perhaps a contact for you.

http://www.hmc.psu.edu/neurology/ you can search by a doctor's

speciality - for some reason Ross and E. Harbut come

to mind. Perhaps one of our other members in PA will jump in and

recommend a good physician for you.

Gretchen