Re: It's official--diabetes

[Guest guest]

Interesting to find out about the diabetes. I was considered by the endo I

fired to have type 2. But after firing her and talking with the doc who

diagnosed the melas he said that melas diabetes reacts differently.

The np I now see for the insulin pump said that there is actually a type 1 1/2,

that is what I think some people on this list and others referred to it as.

My blood sugar goes up with physical activity and down with mental activity.

Janet Sample

Re: It's official

Heidi,

I'm sorry you have gotten this diagnosis. I am glad that some

answers are coming your way though.

I hope your coming appointments go well. I will be interested in your

opinion of Dr. Sims. I am supposed to see her in June.

Smiles,

a

On Sun, 10 Apr 2005 11:57:52 -0000 " heidicoleman2002 "

mom2colemankidz3@...> writes:

So, last week I received a clinical dx of mito from both neuro and

metabolics. So I guess I'm in the right place. Neuro said that I

don't have MS and my brain MRI shows no evidence of stroke so the

episodes could have been SLE's. Bloodwork and exam show muscle

disease. Carnitine deficiency plus other body systems and funky labs

plus family hx give enough weight to a clinical dx. Labs for DNA and

other funky things were drawn Monday so we'll see what comes out of

it. I may go down to Atlanta for a muscle bx if we don't find it in

blood. Not sure if it's dominant or maternally inherited because ther

are shockingly few boys in the family. Several stillbirths and

miscarriages that were boys though. Go figure.

The theory about the sudden terrible muscle problems is this: I've had

this underlying myopathy all my life, since you can't change your

genes. I've compensated well most of the time but the drug reaction to

metformin (which happens in people with mito, go figure) destroyed

healthy muscle and left me with more abnormal, affected muscle trying

to do the job. So now I need to find out how to condition this lousy

muscle and get on with life. I have PT and OT evals next week. I'll

have a hearing test, a neuro-ophthalmology exam, and a sleep study. It

will make for some busy weeks but we'll get more info. I really need

to figure out if this will be a short-term thing or if I should try to

modify my work (although right now I can't write so I can't work at

all).

The diabetes is under control with insulin 4 times a day and blood

sugar checks 4-7 times a day. Still waiting for the blood work to see

if it's type 1 or2.

Heidi

So now I have an appt with Dr. Sims at MGH. I've heard conflicting

reviews but hopefully it won't be a waste of time.

[Guest guest]

Janet, I am joining this conversation late, but can you tell me how MELAS

diabetee is differrent and how it is treated? I have MELAS, this year I was in

the hospital for a month with Asthma, Bronchitis, then with the steroids I

ended up with a blood sugar of 500. Naturally, they gave me insulin until I was

weaned off the steroids 6 weeks later. I am a little concerned that I

eventually will become diabetic, any tips greatly appreciated. This little

infection

set me way back. I was in a rehab hospital for 6 weeks and now at home with

PT/OT.

Thanks

Martha