another hospital stay/ physiatrist

[Guest guest]

hi,

the physiatrist i saw today was great- he is under going chemo

rigt now and he totally relates to all of the gross, the horrible , the

scary etc. we could really talk plus he is setting me up with

neuro psych to see how i am doing now to get some markers (

he actually knows my research so knows where i should be.)

then they have all these different levels from home consults, how

to deal with lights in stores, a whole schlew of things. he knew

some other people with bazaar stuff like mine- he attributes it all

back to my underlying autoimmune disorder and that i have had

menigitis 4 times plus. he has cutely named it " angry brain

syndrom. " he has seen people like that develop all of these

brain imbalances like I have from adrenal, autonomic, estrogen,

glucose, neuropathic, etc.

his specialty is traumatic brain injury and rehabilitation. i did my

undergrad work in this so i have always been amazed by the

power - healing power of the brain. so i believe in possibilities.

he is the first upbeat person i have met in a long time- who says

himself ' " aren't you just sick of those people who walk away and

tell you there is nothing else i can do.' " - since he has cancer and

sees himself as a survivor (and he looks great although he is in

chemo now).

my neurologist totally bailed on me after all of this- i was

hospitalized this week when i crashed too badly ( 911)- he said

simply see your primary and tell him to read my letter. well is

letter was purely twest oriented with no management skills for

my doctor to go by. basicly, he is toooooo busy. so it is up to us

to push ahead.

the inpatient high dose prednisone and fluids along with florinef

did the trick but it is so short lived. threee days worth. i already

am blacking out today before my bp is crashing - so i anticipate

it.

i am looking into some sort of couple time monthly iv fluids etc.

outpatient to stop more adrenal/autonomic crashes. the office i

was going to last year became too difficult. i can not keep having

all of these emergences- five since january and that does not

include all of my falls and viruses that land me in there.

so my primary wo is really a gi, thinks we should find another

neurologist and just use what work up i did get as a basis ( I feel

like i have wasted two years of my life waiting for these guys!).

so please, anybody who knows some great ones, not mediocre,

great ones who are personable and interested and available

and excellent- please tell me. I live in phila. which is well

located. i would even go to fla where my dad is if someone told

me this person is the greatest.

[Guest guest]

I'm so sorry to hear of all of your medical problems without the benefit of

a decent physician. I'm glad that you have at least find a good

psychiatrist.

I'm still on Medrol... 16mg, every other day since May 1. Also had 2 other

rounds of steroids. It gets old doesn't it? Not to mention the weight gain

and the risk of steroid induced diabetes.

I have an apt. with a neuro in ton, S.C. on August 19. I have been

told that he is " great! " I'll let you know if you remind me. In the mean

time, my prayers are with you.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com