Celia

[Guest guest]

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Hi Celia,

I'm sooo glad to know you really understand because I just need to

hear that right now.

I AM SOOOOOOO frustrated I don't know what the heck to do. I'm not

depressesd or angry. I'm just very frustrated.

I have tried EVERYTHING to seach for an answer and I'm at a total

brick wall. I've seen every kind of doctor, been to every hospital

and had every test.

There is ONLY one thing to do now and that's to go on TV and beg for

someone to help me. I've been e-mailing 1 station a day. Today I'm

going to call one.

I know I have a strange problem and I really understand that, but

when I'm having a strokelike episode, and I have to pray not to die

I can't take that. I can't even go to the ER no matter how bad I

feel because they all know me and I know they won't find anything.

They treat me like crap in the er so I never go anymore now for

almost 2 years.

I've been just trying to take this, but the last few episodes left

me with some lasting affects. I always get over everything, but

I'm having periods of drawing a blank when I talk and looking dazed.

When I had a medium attack last week, my husband came in the room

and I couldn't speak to him for about a minute because I couldn't

procsess what he was saying to me. He said why are you staring at

me?

Sooo I need help. I'm sick Of seeing new doctors because once I

tell them the story(even though I make it very short and simple now)

They can't deal with it and go into melt down.

I really don't have anymore reason to go because I've have

everything done.

What do I do?

Sorry to go on, but i needed to just get it off my chest today. I

love my life, even the hard times, it has made me strong, but not

having the right medical help is scarry.

Thanks laurie and alice for writing me back too.

In , " cghng888 " wrote:

> -Oh , I'm sorry you are still having such a rough time- and

still

> undiagnosed. This is so me, you don;'t know how much I empathize

with

> you. It is just so frustrating dealing with these docs. What I find

> the hardest is continually being labled as " functional disorder "

Each

> one passes this to the next one, so I feel like I never get a fair

> shake. meanwhile my life is falling apart. I have just been

referred

> to my FIRST endocrinologist,after 16 years, Go figure. I hope you

can

> find a caring and helpful physician, Celia-

>

> - In , " tanya2727 " wrote:

> > I have a friend I meet through the MDA 2 yrs ago. She was on

this

> > site for a short time and had suspected mito. Well she had all

the

> > test we've had ,muscle biop and emg, mri. Her test was all neg.

> >

> > She went to Europe and had all test over and they showed mito

> > finally. But she said now that she's back she can't find a

doctor

> > to treat her.

> >

> > I had been doing somewhat ok for a few months, then in june

things

> > got bad again. I'm having the strokelike episodes alot and have

> > lasting weakness and slow thoughts at times. I have a headache

24/7.

> >

> > Lets not talk about fatigue! My muscles are shaking all the

time.

> > There are so many other symptoms, but I'm on lots of meds for

most

> > alot of them, so I just try to cope everyday.

> >

> > Since the attacks have come back, I'm trying to continue with my

> > search for a DX. I went to the lab for blood work and the tech

told

> > me about a lady who came in all the time in a wheel chair. She

was

> > real sick and had been to many doctors. Well she found the

right

> > one who found out her problem and she went to a walker to cane

and

> > then walking on her own.

> >

> > I need to hear that so much today. It's getting harder to fight

and

> > search.

> >

> > Last weak I went to my 50th endocrinoligist. As soon as she

walked

> > in I knew she wasn't going to even try, and she didn't. I

wans't

> > feeling well so I cried after the visist in my car BUT, I

quickly

> > recovered. I getting much better at this :-).

> >

> > I know many of you are going through VERY rough times and You

will

> > be in my prayers.

> >

> > I will not give up,

> >

> >