main doctor

[Guest guest]

,

My main doctor is my Internist. You know routine health care - but also

well aware of CMT and can handle my needs. Another doctor I have seen

regularly for 2 years is my Back/Orthopedic doctor. Both are wonderful.

I used to see a Neurologist about 2 times a year, but I have no need

now. If I find a doctor I like, I ask him/her to recommend someone, so

perhaps your husband's orthopedist can recommend a neurologist.

Sorry, I have no experience with Loritabs or COQ10.

~ Gretchen

[Guest guest]

:

Unfortunately, there are not many doctors out there that know much or are

willing to learn about CMT. I have been to various types of doctors and

there doesn't seem to be a set pattern regarding who is most knowledgable

based on their field of study. I too have been to the local MD clinic with

poor results. I believe this doctor is familiar with CMT, but doesn't seem

to think it's any big deal. Maybe that's because he sees others with such

severe cases of duchenne's etc, that I make no impact on his sensibilities.

On the other hand, my ortho has encountered several patients with CMT and

has taken the time to research and try to understand. I would suggest tho,

that your husband see a neurologist. They are supposed to know and

understand our neurological function as human beings and some of them really

do! Ask your MD if he can recommend one or ask around with your friends.

That usually is the best source of info on doctors. I don't know about the

lortab, the only time I've ever taken that was after a root canal. It made

me really sick to my stomach and I thought it was a pretty strong

painkiller. I would say it's never a good idea to continue with that level

of pain medicine over a long period of time. First, because you build up a

tolerance for it and secondly because it will mask symptons that may need to

be addressed in other ways. The good news is I have been taking the

co-enzyme Q10 for about 3 months now and I love it. I take 200mg a day and

am amazed at the energy I have experienced. Keep in mind, it's not a

miracle supplement so it's not like I don't still have to deal with the CMT,

but it has helped me make it to the end of the day with fewer incidents of

fatigue. I have also started exercising (stationary bike - low speed, level

plain)which I believe has also helped my energy boost.

Good luck to you and your husband. I hope you find the help that you need.

Try to access this site as often as possible. I am finding that there is a

wealth of information right here among others with CMT.

>From: " jjslp122 " <JJSLP122@...>

>Reply-

>

>Subject: Who is your main doctor?

>Date: Tue, 18 Mar 2003 03:05:30 -0000

>

>My husband, , has CMT, but he doesn't have a doctor that oversees

>his disease. He was diagnosed 15+ years ago by a doctor in a

>different city and he never saw him again. A few years ago we went

>to a Pediatrist and he said he didn't know enough and referred us to

>an Ortho. doctor that did some wonderful surgeries on his feet, but

>he is in a different town and he is usually talking to about the

>CMT from a ortho perspective. He will prescribe him pain pills, but

>we are worried that he is taking too much (BTW - he takes 4 lortab

>5.0 a day. Does that seem normal or too much?)

>What is the right type of doctor that will know the most about this

>disease? We went to the MD clinic and that was a big

>disappointment. Their doctor didn't seem to know much or offer much

>care.

> is basically just run down and hating the fatigue. He is in a

>job where he is on his feet all day. He is not willing to give that

>up and he wants to feel more energized. I read about CoQ10 as a

>help. Has anyone taken that with good results? Is there any other

>god advice?

>Thanks so much,

>

>

>

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