Mitochrondrial Myopathy - Muscular Dystrophy Message Board

Snickers60 · 10-09-2008, 01:04 PM

Hello, I'm a newbie here.

I was diagnosed with Mitochrondrial MD back in 1993. I also have fibromyalgia and a few hundred other things....SMILE...ok..let's don't

I have been in a serious, serious health and muscle decline for the past 3-5 years and this year has taken me to a Scooter. I've been staring at them for a long, long time.

No longer able to get groceries, do housework, get dinner only occasional...just living, breathing in and out has become a huge chore. The only parts not affected so far are heart and lungs and liver.

My Neuro says I'm severe.........and is sending me to TOP DOG NERUO she says...in Atlanta in next few weeks.

I'm sooooooooooooooooooo discouraged. Just turned 60, went on a cruise and wound up collasping at LAX and in hospital unable to move. WAYYYYYYYYYY overdid. Understatement.

Anyone here have MITO.......how are you..........vitamin cocktail help ?

How bad is it for you ?

THANKS sooooooooo much for reading this far.

Snickers60

Wallis86 · 10-09-2008, 05:42 PM

Hey Snickers,
I might be a fellow mitoer also. I'm waiting on my test results and possibly going for a muscle biopsy. My mito would be somewhat atypical, if there reall is such thing as typical mito. I just got some blood work back stating that some of my amino acid levels could be due to a pyruvate dehydrogenase E3 deficiency, which I guess is a type of mito. But I'm still waiting on other results.

I have dystonia and spasticity in my legs and sometimes my trunk and arms, myoclonus conscious seizures, GERD, severe hypoglycemia, tremors, migraines, and probably more but I don't remember! I also have a completely healthy twin sister!

I haven't started any treatment except baclofen for the spasticity, which hasn't helped, and I'm hoping to just get this mito diagnosis so I can stop wondering what's wrong with me and move on! I'm in a wheelchair most of the time out of the house, use crutches for shorter distances, but can still walk around my apartment (although with a very spastic gait!).

Snickers60 · 10-11-2008, 07:19 AM

Hello, thanks for your post. Do you remember having symptoms all your life as you look back or is this something new to you ?

I can look back early into childhood and see it's been there all the time. I always felt bad that I could not keep up with other kids. I just knew in my little mind that something was not right with me. I did not have the stamia they did. I got exhausted over things that did not even wind them.

I was sickly with IBS, Migraines, Gerd, WEAKNESS, learning disabilities after 6th grade, and a long host of other symptoms like TIA'S, stroke like episodes.

I have ragged red fibers in my biopsy. I have no idea what kind you have...........that's a new one on me, but hey, there's a go zillion different kinds that cause various symptoms in each individual. Certainly it's a very complex illness.

The guy DOC ....I will go to in Atlanta suppose to be the TOP DOG for Genetics and finding out exactly what kind one has and prescribing the Vitamin Cocktail for them.

Waiting on vitamin testing now and hopefully will see him in November..should be interesting.

Keep me updated if you don't mind, I'll like to see how it turns out for you.

THANKS, SNICKERS60

Wallis86 · 10-11-2008, 07:45 AM

Hey snickers,
Ironically I was diagnosed yesterday, but didn't really clear up the mito part. I was dx with severe dopa responsive dystonia with dopamine levels of 40 (they should be 150+). The problem is that many people with mito have DRD as well, and vice versa. Basically, the doc told me at this point it wouldn't matter one way or another if it was secondary to mito because he would treat it the same way, with dopamine. I think he said that he might be able to tell if its secondary after some more tests.

I've had problems from the time I was 11 (11 years ago). But I had little quirky things all my life really. I may be headed to columbia in ny for further mito testing, so ill keep you posted.

Unfortunately, I've had way to severe DRD for too long so I won't have excellent response to meds, only partial response, but I have no issue walking with crutches and I'm getting my service dog very soon.

Snickers60 · 10-13-2008, 09:59 AM

Sooooooooo sorry to hear about your diagnosis. Don't know much about that kind. There's so many and so much info. Please keep me updated. So sorry you are having to go through this so young. I got sick very young also so I can relate.

Can't type much today.......sorry........in debilitated pain.

BLESSINGS, SNICKERS60