Re: furious--

[Guest guest]

I can only say Amen Amen!! Gone are the days when I will trust the

doctors' decisions without doing some independent research. I have

been burned/betrayed way too many times. I don't know if that

happens more to those of us with rare disorders (because most

doctors know less about our diseases) or if this is endemic to the

medical system. Whatever the reason, I have found it imperative to

protect myself if I want to maintain any functional life at all.

Barbara

> Oh I am sooooooo furious I will probably never sleep a wink

tonight and I am to leave on a trip in the morning, the good kind:)

>

> Something Alice said hit home with me so much and I wanted to

comment on it,.

> >Maybe body chemistry comes into play but if you read the warnings

on all your meds, it's likely that we would not take any.

>

> Alice>

>

> Well that is exactly how I feel, I am so afraid of medicine and

always have been, so this time I decided I was not going to look up

anything on these medicines and I was just going to be a good girl

and trust and take this medicine, feeling I would be better off not

knowing the side effects. Because like Alice said, they all have

serious side effects. You have to weigh carefully everything you

put in your mouth to see if it is really worth it. And this is the

FIRST time I talked myself out of looking it up so that I wouldn't

take a chance on being to scared to try it or be preconditioned to a

possible failure. WELL.........I just looked up Topomax!

ooooooooohhhh am I furious, it is a good thing I am going away for

awhile because this easy going smiling lady does not get upset often

but when I do, watch out! Seems this medicine;'s common, now mind

you it is " common " side effects are double vision, cognitive

problems, memory dysfunction and muscle weakness. All the things I

have!!!!! I have documented double vision for over 20 years, I

have just been through extensive formal memory clinic testing which

proved I have some serious deficits in my memory and of course with

the proven McArdle's disease and the clinical dx of mito, you know

for sure I have serious muscle problems!!!!! ahhhhhhhhh Why oh why

would anyone give me such a medicine as that????? When they are

trying to help me sleep better to see if it will improve my

memory???? I will NEVER EVER take another drug without knowing what

is written about it completely! I will probably go back and let

this doctor have another chance at me because I am so desperate and

he is suppose to be the cream of the crop, but you can bet we will

discuss this little dity in great detail and I will want him to

read the side effects from the book to me before I say yea or nea

again!!! I will be kind though and give him all the opportunity to

defend his decision on this matter. I am always kind. but that

does not mean I am always cooperative.

>

> Not smiling at the moment, but will be by tomorrow:)

>

>

>

>

>

>

>

[Guest guest]

Hi Barbara, Amen to that! Even when I had my initial dx of Lyme

Disease (which is what probably caused the mito to rear it's ugly

head) I would have been dead if I hadn't done my own research

and become my own advocate. We HAVE to! I would love to sit

back, blindly follow and believe that the docs are Gods, like was

thought in olden days when I was a chiild, but let's face it, ain't

true (in many cases).

When I read of the mistakes made by overwoerked or ignorant

docs, I am even more grateful for the Internet and the " window "

to research info and access to knowledgeable patients to

answer questions that we would have never had access to

before the Internet.

Best Wishes, Anita

> > Oh I am sooooooo furious I will probably never sleep a wink

> tonight and I am to leave on a trip in the morning, the good

kind:)

> >

> > Something Alice said hit home with me so much and I

wanted to

> comment on it,.

> > >Maybe body chemistry comes into play but if you read the

warnings

> on all your meds, it's likely that we would not take any.

> >

> > Alice>

> >

> > Well that is exactly how I feel, I am so afraid of medicine and

> always have been, so this time I decided I was not going to

look up

> anything on these medicines and I was just going to be a good

girl

> and trust and take this medicine, feeling I would be better off

not

> knowing the side effects. Because like Alice said, they all have

> serious side effects. You have to weigh carefully everything

you

> put in your mouth to see if it is really worth it. And this is the

> FIRST time I talked myself out of looking it up so that I wouldn't

> take a chance on being to scared to try it or be preconditioned

to a

> possible failure. WELL.........I just looked up Topomax!

> ooooooooohhhh am I furious, it is a good thing I am going

away for

> awhile because this easy going smiling lady does not get

upset often

> but when I do, watch out! Seems this medicine;'s common,

now mind

> you it is " common " side effects are double vision, cognitive

> problems, memory dysfunction and muscle weakness. All the

things I

> have!!!!! I have documented double vision for over 20 years, I

> have just been through extensive formal memory clinic testing

which

> proved I have some serious deficits in my memory and of

course with

> the proven McArdle's disease and the clinical dx of mito, you

know

> for sure I have serious muscle problems!!!!! ahhhhhhhhh Why

oh why

> would anyone give me such a medicine as that????? When

they are

> trying to help me sleep better to see if it will improve my

> memory???? I will NEVER EVER take another drug without

knowing what

> is written about it completely! I will probably go back and let

> this doctor have another chance at me because I am so

desperate and

> he is suppose to be the cream of the crop, but you can bet we

will

> discuss this little dity in great detail and I will want him to

> read the side effects from the book to me before I say yea or

nea

> again!!! I will be kind though and give him all the opportunity to

> defend his decision on this matter. I am always kind. but that

> does not mean I am always cooperative.

> >

> > Not smiling at the moment, but will be by tomorrow:)

> >

> >

> >

> >

> >

> >

> >