severe body wide edema

[Guest guest]

Dear Dawn,

I don't have any answers for you. However, my dad has experienced

consistently swollen ankles and feet for the past couple of years. He has

tried Lasix, raising his legs, stockings, accupuncture, etc. To my

knowledge, none of these has worked. If anyone has any answers we too are

interested.

I am sorry Celeste is having such troubles. I hope she finds some relief

from the swelling soon.

Cindy V.

[Guest guest]

Dawn

Have they completely checked her potassium levels?? Something is not

working right between the sodium/potassium interchange and it may have

something to do with calcium also. Have they done a complete check on

her thyroid and parathyroid gland. The endocrine glands may be so out

of whack her system has no idea what to do. Also make sure they check

for liver function, that too may be a big issue. It is MSA related, I'm

pretty sure so the brain is not sending the signals to the endocrine

system so nothing else knows what to do.

My brain is spinning but it's out of practice because I have not been

teaching for the last couple of years. I'll dig out my books as soon as

I can but that's a starting point for you.

I'm so sorry she is having such a hard time. This has to really be hard

on her system.

Sally

[Guest guest]

My brother in law has this problem since he had brain surgery. They took

part of the hypothalamus and thalamus and pituitary.

He carries an awful lot of fluid and has an insatiable appetite.

Also difficulty breathing.

Since the SDS/MSA affects so many things in the brain this may be the

area the doctors should look at.

My husband, Ralph, had a lot of swelling too. Nurse told me, if he is

swollen outside where you can see it, he is swollen inside too. He had

great difficulty some times but the diuretics always helped as long as

he would keep away from the salty stuff that made him feel good. Stuff

like chips and salsa. Getting his feet up did not help much because he

would not sty put long enough to make a difference. He was so swollen at

times he could not walk. Could hardly see his individual toes.

Hang in there and keep them guessing until they hit the right fix.

Barb in Arlington

--

"Courage is resistance to fear, mastery of fear, not absence of fear."

--Mark Twain

[Guest guest]

Dawn,

When checking for congestive heart failure did they just do a echocardiogram

or did they do a MUGA scan which is better for diagnosing right sided

congestive heart failure. Many Cardiology Departments do no have the MUGA

Scan, just the echo which is good for left sided failure but is really not

good for right sided CHF.

later and hugs,

cindy

severe body wide edema

> I know I have asked about this before. But I need to ask again. Celeste is

back in the hospital with severe body wide edema. After one day of high

dose Lassik she dumped 1 1/2 gallons of fluid. The doctor would really like

to know what is causing this and of course I don't know. One month ago when

she was in the hospital for the same thing she was checked for congestive

heart failure. The answer was no. They checked her for it again today..no

results yet. Her kidney function is good. So what else could it be? The

doctor would like to know. He is afraid to just keeping putting her in the

hospital ever couple weeks with edema so severe she is having trouble

breathing. Has anyone ever heard of Mirapex causing body wide edema. They

thought it might be Florinef but after dropping this the edema is still

there. I told the doctor I would ask the group tonight. Believe it or not

he is now asking us what we have heard from the group about different

things. Nice to know he r!

> !

> ealizes he is over his head. Aren't we all. Thanks Dawn Morley

>

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[Guest guest]

Barb:

This idea makes a lot of sense since the Thalamus is where they make a

lesion for Parkinson's patients who have severe tremors. It must therefore be

involved in this disease too.

Barbara

[Guest guest]

Hello,

My Dan had this same edema problem a few years ago.

It started when they gave him Lasix for a mis-diagnosis of CHF.

Dan was not on Mirapex. He was on Sinamet.

He was so swollen that his body looked like it would burst. (Dan now wears a tag on his wrist that states"NO LASIX".)

It took from Oct 19. to Jan to stabilize him. I remember transferring from the Washington Hospital Center to town on Nov 5 and he was there till Dec 18. Then he went to a rehab facility, Vencor in Arlington till March and then he came home for a while. This was a few years ago. Yes, We've hit every hospital in the DC area!

The method of treatment was extra hydration and the start of florineff. He had been on Yohimbine( a vasoconstrictor) at that time they also took him off the Yohimbine neurologists and pulmonologists were all baffled but somehow he pulled out of it.

Today he's doing well, He is back on his regular drugs,sinamet, Comptan, amantadine,yohimbine, iron and vitamins. There's also a stomach medicine that he takes but I can't remember the name of it.

Dan is presently in an acute care center in Tampa. I'll be bringing him home next week, to Port Richey. I can then become more interactive with the list.

Good luck to you.

When mirapex first came out, we tried it. It made him worse the first day, so we stayed with the sinamet. anyway. take care, love Ramm

Date: Mon, 03 Dec 2001 21:31:40 -0500 From: dawnmorley@...Subject: severe body wide edemaI know I have asked about this before. But I need to ask again. Celeste is back in the hospital with severe body wide edema. After one day of high dose Lassik she dumped 1/2 gallons of fluid. The doctor would really like to know what is causing this and of course I don't know. One month ago when she was in the hospital for the same thing she was checked for congestive heart failure. The answer was no. They checked her for it again today..no results yet. Her kidney function is good. So what else could it be? The doctor would like to know. He is afraid to just keeping putting her in the hospital ever couple weeks with edema so severe she is having trouble breathing. Has anyone ever heard of Mirapex causing body wide edema. They thought it might be Florinef but after dropping this the edema is still there. I told the doctor I would ask the group tonight. Believe it or not he is now asking us what we have heard from the group about different things. Nice to know he r!