Hi, I'm New & a Few Questions

[Guest guest]

Perrie,

First of all let me say welcome to a wonderful group of people. Second

in answer to your question yes, I have muscle twitches all over my body, not

necessarily all at the same time, but it can be rather annoying at times. The

summer for me and my 3 Mito children is always the worst. The heat and the

demands of the heat that it places on the autonomic system always give us a run

for our Money. We have MIDS, Maternally Inherited Dysautonomia, (the Mito Type

that is) For me in the summer the most important thing to do is stay well

hydrated with sugar type drinks, stay in a controlled environment as best I can,

and remain active. If I become a couch potatoe then I really experience major

twitching. It has been explained to me this is because the lactic acids

build up and the muscle cannot expel it without exercise. The ones I hate the

most are the eye twitches, makes me a crazy women! LOL Anyway welcome and I am

sure others will respond to your question. Do you know about the UMDF United

Mitochondrial DiseaseFoundation? They are on line at WWW.UMDF.ORG There is a

wealth of info at the web site!

HUGS!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS

Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad

Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW!

http://www.youravon.com/elleenmiller Your AVON representative (Sign in

passcode: ElleensAVON if you are signing in for the first time :-)

[Guest guest]

Hi,

I was recently dxed with a mito disease. They are not sure which

one, but what they can tell me is that I have a citochrome C oxidase

defency in the fibers and red ragged fibers. I am 44 and have

been , lets say, less than well. The dr. at columbia presby are

still going through my mito DNA, since they say that they have never

seen this varient before. So, I'm still waiting. Anyway, I'm glad

to find this group! So this is my question. Since the onset of my

major muscle problems, I have had a lot of muscle twitching

(fasciculations). Needless to say, I did the whole ALS head trip at

first, but 8 years later, I'm here and the twitches are, too. Thing

is, I was wondering if any of the rest of you have muscle twitching

body wide, not just under the eye, and if so, does it get worse in

the heat/summer?

Thanks a bunch,

Perrie

[Guest guest]

Perrie

I have the twitching and the strong body movements of myoclonus. My

twitching is always worse when I am physically stressed for any reason.

Since cooling the body takes a lot of energy, this is one of my stressors. I

have learned to live with mine, although they can sometimes drive me nuts. I

notice them more when I am relaxing, so I just move my arms and legs

frequently and this helps.

Welcome to the group. I'm sorry you have mito, but am glad you found us.

laurie

>

> Reply-To:

> Date: Thu, 08 Jul 2004 20:31:43 -0000

> To:

> Subject: Hi, I'm New & a Few Questions

>

> Hi,

> I was recently dxed with a mito disease. They are not sure which

> one, but what they can tell me is that I have a citochrome C oxidase

> defency in the fibers and red ragged fibers. I am 44 and have

> been , lets say, less than well. The dr. at columbia presby are

> still going through my mito DNA, since they say that they have never

> seen this varient before. So, I'm still waiting. Anyway, I'm glad

> to find this group! So this is my question. Since the onset of my

> major muscle problems, I have had a lot of muscle twitching

> (fasciculations). Needless to say, I did the whole ALS head trip at

> first, but 8 years later, I'm here and the twitches are, too. Thing

> is, I was wondering if any of the rest of you have muscle twitching

> body wide, not just under the eye, and if so, does it get worse in

> the heat/summer?

> Thanks a bunch,

> Perrie

>

>

>

>

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