Re: Can't figure it out/Cindy

June 5, 2004

Cindy \,

I amsure with all of the research that we do to try to get help for

ourselves we could all probably sit (AND PASS) medical exams to

become doctors. I have been told by doctors before that I know more

than they do and they ask ME what treatment options they should try

(and not only for my EDS but my RSD and every thing else also). Imean

it has gotten to the stage for most of us that if WE don't take the

effort to research things and give options then our health care is

lacking and we suffer the consequenses by not being diagnosed or

treated for the correct conditions and also for being labled with

mental illnesses etc simply beacuse we are trying to get help to

explain what on earth is going on with our bodies.

Good Luck and I sure hope you find out what is going on with Dylan

soon.

Sharon

> > Hi all, Dylan says he feels " weird " . His pulse is 64. Says he

feels

> his pulse in his head, but if the " blood gets moving " it pounds

> harder. He says he can't figure out if he has a head ache or not.

> Yesterday he had the start of a migraine, so he took the Imatrex

and

> the nausea med. I asked him if it gets worse if he lays down or

> stands up, He says it just comes and goes. Says his stomach feels

> weird. ( the boy's vocabulary doesn't help me much) I keep

wondering

> if he may have POTS. Is this a symptom of it? He is concerned

about

> the way he feels, like something isn't right. I caught the Dr

walking

> out tonight, and he said to feed him ( the kid hadn't eaten all

day,

> but that's not unusual anymore) I can only get one meal a day in

him,

> so I make it the most balanced I can. So he ate 2 hours ago, and

it

> is still happening, what ever it is. Any clue what he's talking

about?

> > Cindylouwho

> >

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