MDA evaluation appt

[Guest guest]

Good to hear from both of you guys. I guess we are the ony males here, not

counting lurkers and relatives (husbands, sons, etc.). Good luck with the

MDA appt, Kent. And I hope you're hanging in there, , best of luck

getting the services you need.

Tuesday I had my MDA " initial eval " at the Boston clinic, which I pretty

obviously " passed " . I didn't meet the MDA coordinator, but I hope the system

is in place enough, at the screwy Neurology Associates of MGH office, that

I'll be approved for whatever the MDA can proviide. Already, the doc is

going to call them to see if they will fund my expensive CoQ10 OTC.

My new neuro doc there is Gilmore O'Neill. He listened to me, even including

some of my theories and opinions, asked a LOT of questions, and seemed to

REALLY care about my quality of life (not just " what an interesting test

tube " ). He took a detailed history over the course of two and a half hours.

He knows a heck of a lot about mito, and also read up on MY condition the

previous night. He agreed to order tests for enzymes, amino acids,

pyruvate/lactate (just static, for now) and basically anything I wanted. He

smiled as he gave his predictions for the test results, but ordered them

anyway ( " just guessing " he said). At the end, he apologized for not knowing

as much as I obviously did (which isn't true, except maybe for some of my

specifics), but that was just him being humble and encouragingly

" fellow-geek " . He's young, and down to earth, and a GEM!!! I almost hesitate

to say his name here, I'm afraid that he will end up mobbed by us all. :-)

ONE QUESTION FOR ANYONE: the doc wants me to do a sleep study (probable

apnea, possibly severe, also RLS), in fact he is ordering it unless I pull

out. I'm very apprehensive, because I sleep very poorly, from 4 AM until

noon (and I don't think I will be allowed to do that). Are there any options

to ask for, or anything I should know, to make this a bit easier and/or

safer? If I don't sleep at least somewhat, I appear only groggy but in fact

that's when I can pass out and fall down, i.e. my grogginess can be off the

chart, and I want this understood by the sleep techs.

Steve D.

> Date: Wed, 28 Sep 2005 19:13:15 -0000

>

>Subject: Re: Hello I am back from nowhere

>

>,

>great to hear you are back in touch and getting some answers. I am

>still on hold waiting for my first appt with an MDA clinic doc in Nov.

> God Bless you,

>kent

>

>

> > Hey everybody,

> >

> > Sorry I haven't posted in awhile, but we finally got internet

>service running and things are finally started looking up here. I

>don't know if I told a lot of people but Dawn and I moved back up to

>Northeastern Ohio to be closer to family because I have been going

>downhill a lot.