Re: Celia/ /Sunny

[Guest guest]

-I hear you guys. i was feeling pretty hopeless about myself too, all

those helath problems, all those docs, those few abnormal tests. Since

mito has been mentioned to me, and what test results I have, do seem

to fit into it- even with docs sort of proclaiming its s " functional "

problem with me, this site has given me hope. I too am trying the mito

cocktail and the advice about diet, hydration etc and it seems to be

helping. Also, i know what tests I should be having and and working on

that too. Like you , i hate to bring up a new problem to the doc,

or even to go in to be seen because I am so afraid she'll just think

it is one more " functinal " thing I am complaining about. in a way this

worries me, because maybe I should be seen, but I don;t want to cause

myself further aggrevation. like you say Sunny- bring up all the anger

and frustration. i try not to dwell on these. just had the most

horrendous attack of vertigo yet, gradually feeling better, but am

undiagnosed with that problem also. Have a good weekend everyone, Celia--

In , z39z@a... wrote:

> Hi, ,

>

> I do understand how you feel. Twenty years of doctors not responding

> to what I tell them, or responding in a way that does not add up, or

> their just being plain insulting, has left me very very frustrated

> myself. I usually don''t let myself go there emotionally, because it

> is too destructive to me. Believe me the rage and frustration was

> strong. Personally, I gave up getting answers from docs a long time

> ago. Years and years ago I said to my husband - really these words -

> " I have a disease that they don't have a name for yet, so it seems

> pointless to put myself though more of the same stupid, insulting

> interviews. I need to wait until they at least have a name, then maybe

> they will get a treatment " I still went for routine things, like

> mamagrams, infections, checkups, etc. I gave each doc ONE crack at the

> other symptoms, and if they did not respond properly, I just wrote them

> off for my problems. And I had years and years of bad times.

> I am soooooo heartened to learn about mitochondrial disease, and to

> hear others here experience SOME of my symptoms. It makes me feel less

> alone, and gives me more hope. Also, I accidentally found a doc who at

> least recognizes mito as a disease. I am hopeful that as more is

> learned, he will keep up with it. I also decided a long time ago to

> try to follow good health habits - diet, exercise, hydration, anything

> that I could find that made sense TO ME. That also gave me some

> feeling of control. I am feeling better, in part I think, due to the

> mito cocktail and in part to exercise and in part to watching my carbs

> (I get hypoglycemic)

>

> , my symptoms are not as severe as yours. Extreme muscle

> weakness, mental cloudiness, and general fatigue are/were the main

> serious ones.(also touches of many others, that i just took for granted

> as part of my body) I have learned of the many other serious problems

> that people experience. I am totally empathetic to your frustration

> about getting medical care. It can be overwhelming.

>

> We need to be persistent. I am not sure what tests you had done, and

> by what kind of specialist. One thing I have learned is NOT to

> believe everything that every doctor has said to me. When what they

> say matches my experience, then I begin to believe. Check on all the

> tests you had, and see what more can be done. Try to find the right

> doctor for it, even if it means traveling. I do not have stroke-like

> episodes. Others here may be able to help you on that score. Don't

> give up. Be methodical, patient, read as much as possible, ask as many

> questions as possible. Read everything here, the UMDF site, the MDA

> site. Know that getting answers isn't simple, and that they may not

> always be what you want to hear, but believe that some may exist for

> you.

>

> It took me 2 years to believe that I had mito, and to learn enough

> about it, so that I feel I am in the right ball park. Now I feel more

> optimistic, thinking that I can make the best possible decisions for

> me. Having this site to learn from has also been so very helpful to me.

> In total, feeling that I have some control is very precious to me,

> and it makes me feel less frustrated.

>

> I wish you luck in your search. There are so many great people here.

> Benefit from their wisdom, knowledge, and support.

> Vent when you need to!

>

> Warm regards

>

> Sunny

>

>

>

>

>

>

>

>

> > ---

> > 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,

> > > >

> > > >

> >

> >

> >

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