Hi everyone

[Guest guest]

Hi everyone,

I have a couple questions????? As most of you know my sister is ellen.

this past weekend she ended up in the hospital. She has been in one

flare after another but last weds. she felt something in her hip. She

has had many problems with her hips in the past. she is in a wheel chair

when ever possible. (her house is not equipped for wheel chair). well,

as the week went by her pain got worse. by sat. morning she called and

said she was in the worse pain she ever had in her life. we told her to

call the ambulance.(her family was away) I was 41/2 hours away at my

other sisters. I only live an hour from ellen and we help each other

out. anyway they took X-rays and nothing broken.of course. they don't

know what's wrong. Her pain is a 15. ellen can take a lot of pain when I

hear her screaming out in agony I know its bad. they admitted her and

gave her morphine. well after hours and hours it eased the pain. the

problem is she almost stopped breathing and then almost went into a

coma. I saw her yesterday and she didn't even know I was there. she is

having a bone scan today. Ellen is afraid they won't find anything and

send her home in pain.

My questions are does anyone know what this could be? I talked to the

nurse I told them it is very frustrating both for the patient and the

doctor because anyone with rp isn't your normal dx. That its hard to

find what it is that's wrong but can't give up. I told them she should

have a MRI or cat scan. this I learned from all of you. They can't give

her an MRI they said because Ellen couldn't fit in machine. Ellen would

kill me if I told you that but I am so worried for her. before she was

dx with rp a doctor told her " gee I really fattened you up on all these

meds. hah. laugh laugh " . She hardly eats,but 26 years on meds can do a

job. there must be something they can do. We don't have drs. with

knowledge about rp around here. Our dr. in boston MA. is suppose to be

the best and we are his only two pts. he's had with rp ever. Never mind

our pc drs. Mine is a lot better than hers though.

Also can you imagine giving her so much morphine we almost lost her.

Does anybody have any idea of other pain meds. I am going to try to get

her transferred to Boston hospital but I am one tiny person in a big

world of doctors and insurance co. You have all been there done that I

bet.

the other problem is that I am having a flare sense June. My doctor put

me on cytoxan and predisone and I was on dapsone, plus 1200 mg of

calcium a day plus a good vitamin. Just found out I was pushed into

early menopause. anyway along with all the rp problems, I am sick as a

dog with the meds. I am trying to push through all the nausea and

weakness. but it gets harder and harder. I stopped the calcium and

vitamins for a while but didn't help. I have two boys 9 & 12 to keep up

with and I want to be with my sister and fight for her. I have been on

these meds before but not all at once. Can't remember feeling this bad.

anyone have any idea's. I do have compazene but it puts me asleep not a

good idea.

I know ellen and i just joined but wow do we need your input.

thanks