Re: Still undiagnosed- more testing

[Guest guest]

Thelma

I'm glad you have a neurologist who is testing for things. Mito is

king of left when other things have been ruled out. I know how

frustrating it can be, as it took me 15 years to get a diagnosis,

seeing many, many doctors along the way. I will keep you in my

thoughts as you continue your travels to find a diagnosis.

laurie

>

> Hello friends, i do read the posts, feel frustrated not having any

> diagnosis yet. My original neurologist(MS specialist) of 11 years ago

> sent me to another neurologist who specializes in muscles. It took 7

> months to get in to see her, which happened this week. The neurologist

> in training working with her spent about 40 minutes with me and she

> spent about 10 minutes. The outcome is that I will have a sleep study

> next and see another neurologist who specializes in epilepsy to rule

> out seizures causing the dizzy spells, and then she may test blood for

> calcium channelopathies. They did not seem to think it was mito. But

> who knows. I feel encouraged that at least I wasn't brushed off. My

> balance has been better for about 6 weeks, not using a cane at

> present. hang in there, everyone.

>

> Thelma

>

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[Guest guest]

Thelma,

Seizures seem to be a common condition for many with mito--both children and

adults--more so in some of the specific diseases than others.

my mother was diagnosed with epilepsy way back in 1975 and when she died in 1988

was still on seizure med when she had a very bad seizure. My sister had a

seizure in 1994 that sent her into a 4 day coma and again in 1996.

That coma is what set her doctors (friends of theirs) looking for answers. That

is when they started connecting the docs between all my mothers health problems

and my sister. My sister had very few health problems and was very athletic up

to that point.

I myself have always had balance, heat intolerance, exercise intolerance,

coordination, hearing, and blood sugar issues.

Of course my mother was never tested but my sister was the first to have a

diagnosis of MELAS. My 13 yr old son and I also now have an official diagnosis

thru a blood test. (we were lucky they could identify the gene)

Janet Sample

Still undiagnosed- more testing

Hello friends, i do read the posts, feel frustrated not having any

diagnosis yet. My original neurologist(MS specialist) of 11 years ago

sent me to another neurologist who specializes in muscles. It took 7

months to get in to see her, which happened this week. The neurologist

in training working with her spent about 40 minutes with me and she

spent about 10 minutes. The outcome is that I will have a sleep study

next and see another neurologist who specializes in epilepsy to rule

out seizures causing the dizzy spells, and then she may test blood for

calcium channelopathies. They did not seem to think it was mito. But

who knows. I feel encouraged that at least I wasn't brushed off. My

balance has been better for about 6 weeks, not using a cane at

present. hang in there, everyone.

Thelma

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.