Newly diagnosed - what to ask doctors & dementia

July 4, 2006

Hello,

My husband(47) was just diagnosed with MELAS. The doctors had been

suspecting it for the last couple of months due to his symptoms

(stroke, diabetes, hearing loss, short, dementia) but we finally got

positive results from a blood test for mtDNA. It's funny, but I'm

finding myself greatly relieved to have a label for all his problems,

even if the doctors aren't very encouraging about being able to help.

His main neurologist is out till next week, so I'm using the time to

gather my questions. What should we be asking about at this point?

I've got the mito cocktail list from the umdf web site and I'll take

that and ask what we should be doing. I've already started DH on

COQ10 myself. What else would you expect the doctors to be doing/checking?

What kind of experience would you want your neurologist to have? I

really like this doctor, but I suspect DH is the first MELAS case

he's dealt with. We're in Santa Clara, California. Does anyone know

of resources(doctors with lots of experience, research locations,

etc.) in California? We're in an HMO, so I'll have to be doing some

pushing to get outside referrals and I have a feeling giving

specifics will help with that.

Over the last few months, DH has been loosing memory and practical

functioning. For example, he doesn't remember being hospitalized two

months ago. He'll do things like serve himself soup on a plate. His

aphasia seems to be going through yet another downturn. It cycles.

He's on Aricept to see if it will help. Does anyone have experience

with dementia? Any treatments that have helped reverse it?

One thing I just can't understand is whether the stroke-like episodes

mean the brain cells are dead or if they are just irritated and will

recover given time. Or more simply, any opinions on whether my

husband will recover his memory and functioning?

Thanks for any ideas.

JoAnn in Santa Clara, CA

July 4, 2006

JoAnn M

Welcome to the group. I'm sorry your husband has mito, but understand

your feelings of relief that he has a diagnosis. Many of us

experienced the same thing.

Some of the tests that are suggested are organic and amino acids,

pyruvate and lactic acid, echocardiogram and EKG and liver and kidney

panals. These are to pick up on any problems and to establish

baselines.

I can't help you with your questions about dementia. I have word

finding problems which have improved with the supplements, especially

Magnesium Orotate. Please check with the doc before starting it.

As for the neuro, I'd say stay with him if he is willing to learn and

you like him. My neuro didn't have a clue about mito when I asked him

to refer me for a mito work-up. He has become very knowledgeable and

is a wonderful support for me in addition to his medical care.

laurie

>

> Hello,

>

> My husband(47) was just diagnosed with MELAS. The doctors had been

> suspecting it for the last couple of months due to his symptoms

> (stroke, diabetes, hearing loss, short, dementia) but we finally got

> positive results from a blood test for mtDNA. It's funny, but I'm

> finding myself greatly relieved to have a label for all his problems,

> even if the doctors aren't very encouraging about being able to help.

>

> His main neurologist is out till next week, so I'm using the time to

> gather my questions. What should we be asking about at this point?

> I've got the mito cocktail list from the umdf web site and I'll take

> that and ask what we should be doing. I've already started DH on

> COQ10 myself. What else would you expect the doctors to be doing/checking?

>

> What kind of experience would you want your neurologist to have? I

> really like this doctor, but I suspect DH is the first MELAS case

> he's dealt with. We're in Santa Clara, California. Does anyone know

> of resources(doctors with lots of experience, research locations,

> etc.) in California? We're in an HMO, so I'll have to be doing some

> pushing to get outside referrals and I have a feeling giving

> specifics will help with that.

>

> Over the last few months, DH has been loosing memory and practical

> functioning. For example, he doesn't remember being hospitalized two

> months ago. He'll do things like serve himself soup on a plate. His

> aphasia seems to be going through yet another downturn. It cycles.

> He's on Aricept to see if it will help. Does anyone have experience

> with dementia? Any treatments that have helped reverse it?

>

> One thing I just can't understand is whether the stroke-like episodes

> mean the brain cells are dead or if they are just irritated and will

> recover given time. Or more simply, any opinions on whether my

> husband will recover his memory and functioning?

>

> Thanks for any ideas.

>

> JoAnn in Santa Clara, CA

>

July 5, 2006

One thing if I may, JoAnn, since you and your husband are only just starting

on the mito cocktail, is that you try to get baseline blood tests on

everything possible that might be affected by these supplements, BEFORE you

start. For obvious reasons.

Some here argue for caution and advise to add just one supplement at a time,

partly for safety (some have very adverse reactions) and partly in order to

highlight which supplement may have helped (or didn't). However, this can

take a long time. There is another problem in this approach, namely huge

statistical " noise " i.e. too many other unconrollable variants, so as to

make it hard to be sure exactly what mattered, the supplement or something

else. These variants can include dosage and timing of supplements, amount

and timing of sleep, amount and type and timing of food, and so forth for

other factors like exercise, ambient termperature, etc. Not to mention, that

the disease may simply be progressing over time. So it's very hard to

experiment with a sample size of one (not even enough for a control group),

and no chance of single- let alone double-blind testing.

And I think there's a bit of different opinion here, about whether or not to

proceed only with a doctor's close followup.

Still, it's OUR bodies and we each much choose what to do. We each have

intuitions (albeit not infallible) about what works, from the kind of close

self observation that no lab could ever duplicate. Fortunately, there are

many here who have acquired strong personal evidence for the value of

certain supplements, for themselves. I certainly have, but it did take quite

a while of trying things.

Steve D.

P.S. My understanding is that the mito SLEs are only stroke-LIKE, and can

usually reverse within hours or days. But that's from listening to others,

so perhaps you should hear directly from them. I personally have had several

serious neurological symptoms improve dramatically with the right meds,

supplements, or physical treatment, so don't give up hope!