Hi, I'm new and a few questions

[Guest guest]

Perrie,

In a word-Yes. I have had muscle twitches for the last 14 years.

They are not as bad as they were in the beginning. Now I only get

small twitches. Sometimes in my eye, but just as often in other

muscles in my body. This happens especially after activity. Back

when I was still walking for exercise, after I finished I would sit

down and my legs would just be twitching all over the place.

Sometimes these twitches are observable to others. In the

beginning, before I started any kind of therapy, I ended up in the

emergency room because my whole body was jerking out of control. I

was consious during these episodes. Of course the doctors didn't

know what was happening and so they chocked it up to me having

psychological problems. I still remember the conversation I

overheard between the doctor and the paramedic who brought me in.

The paramedic was trying to describe what he had seen. (at one point

while they were transporting me, my jerking was so violent that I

almost knocked over the gurney I was strapped down on. Try to do

THAT on purpose) The doctor just talked over the poor guy and

finally convinced him that there was know way it could have been

that bad. lol .

Joanne

[Guest guest]

Hi , Laureta, and Joanne,

Thanks you so much for responding to my question. I was getting a little

worried that this meant something had changed. I have been twitching for about

7 years now, but they seem to be getting worse with time. I guess the muscles

are getting worse, so the twitches are. Heat and exercise make them worse, too.

Joanne, the story you told me about having such violent twitches, is the exact

story that happened to my sister. She was going for IVF to have a baby, when

the whole program failed due to to many eggs. When they gave her a shot to stop

all her hormones, she started to do the same thing that you did. She spent 8

days in the hospital, and even though I kept telling every one of her

neurologist that I was being worked up for mito disease, no one would listen.

In the end, they told her that the problem, which was still going on and went on

for about another 6 months, was all in her head, and that she was having a

psychogenetic episode. Needless to say, now we know this is wrong, since my drs

are pretty sure that this is strictly a mtDNA problem.

Don't you love drs who are god?

Perrie

[Guest guest]

Perrie

I have fallen out of bed a few times over the past couple of years. Dr.

Cohen thinks it is due to one of the myoclonic jerks that can lift me off

the bed. It sure is a strange feeling.

laurie

>

> Reply-To:

> Date: Fri, 9 Jul 2004 16:05:10 -0400

> To: >

> Subject: Re: Hi, I'm new and a few questions

>

> Hi , Laureta, and Joanne,

>

> Thanks you so much for responding to my question. I was getting a little

> worried that this meant something had changed. I have been twitching for

> about 7 years now, but they seem to be getting worse with time. I guess the

> muscles are getting worse, so the twitches are. Heat and exercise make them

> worse, too.

>

> Joanne, the story you told me about having such violent twitches, is the exact

> story that happened to my sister. She was going for IVF to have a baby, when

> the whole program failed due to to many eggs. When they gave her a shot to

> stop all her hormones, she started to do the same thing that you did. She

> spent 8 days in the hospital, and even though I kept telling every one of her

> neurologist that I was being worked up for mito disease, no one would listen.

> In the end, they told her that the problem, which was still going on and went

> on for about another 6 months, was all in her head, and that she was having a

> psychogenetic episode. Needless to say, now we know this is wrong, since my

> drs are pretty sure that this is strictly a mtDNA problem.

>

> Don't you love drs who are god?

> Perrie

>

>

>