muscle biopsy

[Guest guest]

Tina,

Don't mess around with your local hospital when you have one of the best places in the world at your finger tips. Call Dr. Cohen at the Cleveland Clinic. It may take you longer to get an appointment, but I think it would be worth the wait.

Kathy, grandma to Audrey, 30 mos

[Guest guest]

Tina,

Don't mess around with your local hospital when you have one of the best places in the world at your finger tips. Call Dr. Cohen at the Cleveland Clinic. It may take you longer to get an appointment, but I think it would be worth the wait.

Kathy, grandma to Audrey, 30 mos

[Guest guest]

Bob,

Your symptoms sound like mine--mild but when they hit they are major. I mainly

have fatique after doing walking like thru a super walmart type store, from the

large parking lot where I have a temp job. Sometimes I get muscle spasms.

Also, physical activity makes my blood sugar rise, not fall as in " normal "

diabetics. Because of this and the trouble with the walking distances I was

able to get a state disabled parking permit. I live in Wisconsin but you should

be able to get one also. It saves some walking but sometimes the handicapped

spots are pretty far from the doors also.

I also have the periphal neuropathy now and then. In fact after my sister was

diagnosed that is what prompted me to get tested. I had a blood test since they

new my sister had MELAS from a blood test earlier that year and a muscle biopsy.

The top of my left foot always felt like my shoe was tied too tight, even with

nothing on. The problems are better now except lately I have not been good and

taken the carnitor and qgel for a week or so and the last few days at work while

sitting had quite a few muscle spasms in my legs and in my feet. I did take the

carnitor and qgel today and hopefully in a couple of days I will be better.

My 11 year old son get fatiqued now and then but his main problem is

constipation very badly if he does not take the qgel. But since he has been on

the carniqgel going on two years now he has not had a major problem that

required a trip to the hospital for an enema. Now he only gets constipation

when he forgets to take it for a couple of days in a row. I leave for work

before he leaves for school and sometimes I forget to ask him if he took it.

Anyway, the disease affects everyone so much differently. My sister had no real

symptoms and then went into a 4 day coma with no apparent side effects and then

2 years later did the same. Then a stroke a couple of months later and then 10

hours of seizures they could not control while on anti seizure medication and

then a two week coma. After all that she seemed fine but then had a relapse.

My mother and aunt also probably had melas as my mother had blackout seizures

and my aunt also.

Anyway, keep looking for answers. Even if you do not get a definite diagnosis,

after your biopsy you may want to talk to your doctor about taking the CoQ10

Qgel is one form that is supposed to be absorbed better and you need to take 3

times less of it. There are others out there but I cannot remember their names.

Epic4health.com and swanson vitamins also sell a carnitine capsule. Neither of

theys require a doctors prescription but you may want to consult your doctor.

Carnitor is a prescription form of l-carnitine made by sigma tau. I guess there

are now also generic equivelents.

Janet Sample

Muscle Biopsy

I was lucky enough to get slotted in quickly at UCLA for my muscle

biopsy. I go in tomorrow morning so hopefully I will have some

answers as to whether I'm dealing with a mito condition.

We just had a fire drill at work and my legs feel like rubber after

walking down 6 flights of stairs. Some of the symtoms seem

consistent with mito but the peripheral neuropathy continues to get

worse.

Luckily I don't have pain unless I overdo it and get muscle spasms.

Otherwise just dealing with fatigue and altered sensations with the

arms, legs, face and abdomen.

I'm very lucky that I've not been dealt any significant disability as

yet but the continued progression of symtoms is disconcerting.

Starting to have problems with minor stumbling/trip easily when

walking.

Sounds like UCLA uses the fresh tissue method rather than freezing so

I hope to get a clear answer and figure out what the next steps are.

Bob

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