Re: Advice for appointment with genetic neurologist?

[Guest guest]

In a message dated 3/28/2005 4:42:31 PM Eastern Standard Time,

rogerpanton@... writes:

Dr. Penny Greenstein in

Boston, MA, whom I will be seeing tomorrow. I'm a 24-year-old male, and

my symptoms involve arm/leg pain, foggyheadedness, fatigue, and

abdominal cramping, and those symptoms all seem to manifest as food

reactions.

I'm 27 yrs old and have mito. I see Dr Korson in Boston for management of

everything, but have heard Dr Greenstein is pretty good for neuro. I know that

Dr Korson recommends her to some of his patients. I hope you have a good appt.

with her. Since you're still in the diagnosis stage, I would ask her to

order some of the " mito labwork " (ie: lactate, amino and organic acids,

carnitine levels, etc) to see if that shows any abnormalities. Even if it's

normal,

you could still have mito. But if it's abnormal, that will help support a mito

diagnosis and may direct treatment with some of the supplements in the mito

cocktail. _www.umdf.org_ (http://www.umdf.org) will provide you with useful

info.

Malisa

[Guest guest]

I do not have any advise about your appointment, but your symptoms of abdomial

cramping and the learning disorders sound very similiar to my sons. The

fatique, leg pain, foggyheadedness sound similiar to mine.

We both have mild symptoms of MELAS as we are both slightly heavy. My sister

and mother were very petite and thin, they had actual seizures while we just

have " evidence of seizures " .

What helped my son, now 12 yrs old two years ago after nothing helped, diet

change, so called constipation stoppers. What has helped has been Carniqgel

which is Carnitor and Qgel combined. I believe others on this list also use

high doses of the Qgel (which is CoQ10 in a special form). He only takes about

1/3 of what he is supposed to take because he doesn't like to take medication.

But, it works for him. No trips to the doctor in the last two years.

It also helps his attention problems some. When he was little I thought he was

autistic and he did not talk until he was 3. Then from 3 to 6 he went to a

special speech teacher not so much for his speech but to actually get him to

talk and express himself.

Anyway, the qgel you do not need a prescription but should consult your doctor

first.

Janet Sample

Advice for appointment with genetic neurologist?

My primary care physician suspects I may have mitochondrial disease,

and has referred me to a genetic neurologist, Dr. Penny Greenstein in

Boston, MA, whom I will be seeing tomorrow. I'm a 24-year-old male, and

my symptoms involve arm/leg pain, foggyheadedness, fatigue, and

abdominal cramping, and those symptoms all seem to manifest as food

reactions. I've been diagnosed in adulthood as having multiple learning

disorders, most notably nonvberbal learning disorder with attention

deficits, which is on the autistic spectrum.

Any advice so that I might " make the most " of the appointment would be

very appreciated. Thank you.

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