Appt with PT and Doc today

January 17, 2005

I saw my PT this am and the doc this afternoon. Daryl, my PT is

feeling very frustrated that he " can't fix me " . I can totally

understand that when you are a perfectionist, like he is , a Mito

Patient may make you question your abilities and all the education

you spent years studying. I am used to be the " odd ball patient " he

is NOT used to taking care of " odd ball patients " , LOL! He spoke with

the doc after I saw him on Firday. I saw the doc this afternoon and

discussed the problems with the muscle movement and the neck issues.

He put me back on Quinine and told me let him know how I was doing in

a few weeks. There is a new med for RLS that is used by Parkinsons

Patients. It is a form of L-Dopa. This is the same type of Dopamine

that Parkinsons Patients take to replace the dopa that is defiecient

in their brain. RLS and certain movement disorders are caused by lack

of dopamine in the muscles. RLS/ Certain Mito Problems/ Friedrich's

Atxia to name a few.

If the Quinine brings no relief than he will try the L-Dopa. I also

brought him the UMDF Newsletter from the Winter 2004 addition. The

cover article is about Diet/Nutrition/Excersice. I just went looking

thru the file folders I have been keeping over the years and found

this issue today while trying to answer some of my own questions. In

lew of all the conversation about Carbs and Lactic Acid, this maybe

valuable rereading for some of us.

All in all, doc hopes that the muscles calm down so I can get them

to " rest and stop moving continously " . Perfect problem for patients

who are already fatigued and have trouble sleeping.LOL!

To answer Laurie's question, I am currently taking Lamictal 250 mg

twice daily.

I hope to see some changes with the Quinine, but if I don't then

let's hope the L-Dopa does the trick.

Thanks for all the help and replies, Sorry if I this is jumbled, but

I am fighting a crash and one of the signs for me besides muscle

fatigue is mental confusion and typing a zillion typos. Hand and

brain are out of synch. It will take me twice as long to type a post

when I am " going south as doc like to call it " than when I am stable.

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