Re: Welcome Alan -to Gretchen

[Guest guest]

Thanks for the reply, Gretchen, I already feel better about the flu-

like symptoms because several people responded that they had that

too. Re the MDA docs, I have looked at the " Ask the Experts " section

of the MDA web site and it is not hard to find doctors giving exact

opposite answers to the same question. So far I have not been able

to find a doctor who will allow me to " educate " them. Doctors can be

a real arrogant bunch of people.

I think you'll find this little story interesting: The MDA doctor

insisted that I have the DNA test. I took it in March and they

finally told me in July that the result was " inconclusive " . They

would not let me come back for another appointment until October and

I did not go because MDA has still not paid Athena Labs for the test,

despite promising me at the time of drawing blood that they would pay

it if my insurance company did not. On top of that, I called Athena

and they told me that " inconclusive " did not mean they couldn't tell

if I had CMT, it meant the blood sample was bad and I needed to take

the test again but they would not charge for the second test. I also

found out from Athena that they gave MDA the results of the test in

April. Can you imagine how slack it is of MDA not to have told me

all this? I plan to go back if I can get them to pay Athena, if not

I'll probably give up on MDA.

Alan

> Welcome Alan,

>

> Thanks for introducing yourself to us. I have the disc disease

myself,

> among other things.

>

> I also had a poor experience at an MDA clinic years ago and never

went

> back. I stick to MDs in private practice which I feel have helped

me.

> Some people had good MDA experiences, others don't. Last time I saw

a

> neuro was OVER a year ago, just for an opinion on my back.

Otherwise,

> now I only see my Internist who takes care of all of me! Private

MDS

> dometimes don't know much either - I take information I find to

them and

> LOL they are getting a very 'unique' medical education with me as a

> patient, hmmm I think I should invoice THEM sometimes!

>

> I was diagnosed with CMT as a kid. No Family history, in 1962. Over

the

> years my parents took me to many Drs. looking for 'some help' -

there

> wasn't any, except for meds or vitamins or 'experimental research

> trials'...I have ALWAYS had foot pain and that does go away with

sleep.

>

> My last Internist was the one who suggested I look into in-shoe

> orthotics and recommended a Certified Orthotist HE goes too (he is a

> runner and wears orthotics). So, there is a guy that helped me!

> Check into our Bookmarks/Links off to the side of the main page in

the

> yellow box. You might find some of the info. interesting.

>

> We can be sensitive to the wierdest things...sometimes I am,

sometimes

> not. CMT has been a life of uncertain idiosyncracity for me! And

still

> is!

>

> I DO get overtired when I do too much, just very tired. I try real

hard

> to manage my activity and fatigue levels. Along time ago a MD

explained

> to me CMT muscles have to work Twice as Hard to do Half the Work.

If you

> let that sink in, it makes sense, from there I started on a life's

> program not to wear myself out ON ANYTHING OR ANYBODY!

>

> Hope this helps a bit - again Welcome!

> ~ Gretchen