florinef, fluids

[Guest guest]

Heidi,

I am sorry that you are having such a rough time of it. I had

pretty much the same kind of onset. I had always had problems with

my heart, but had compensated fairly well. One day I was at work

and just started feeling awful. I went home and collapsed. I never

did go back to that job. I felt like my world had collapsed around

me. My job, my volunteer work everything was just gone. It was all

I could do to take care of my family. And many times it was they

who took care of me.

I have also been on florinef. They tried it after I had a dramatic

positive result to my tilt table test. The doctor looked a bit

scared and said " we are sure glad you have a pacer or we probably

would have lost you " He even told me he was going to write up a

paper on me. I don't know if he ever did or not.

The florinef didn't work for me. I was only on it a few months and

didn't notice a difference. I hope it helps you. It is awful to

have low blood pressure. It makes you fell really bad. I hated it

when people would take my blood pressure and say how lucky I was

that It was so low. I know high blood pressure can be a real

problem too, but until you have fainted dead away you can never

appreciate the opposite. I hope all goes well for you and you can

find some answers.

Joanne

[Guest guest]

I have a question, does anyone know what it means if your AST and ALT are

elevated? I got a letter from my PCP saying that the more information I have

the better I am able to maintain better health? It also said if I had ?? feel

free to call but when I did the nurse treated me like I wasotal idiot. I think

I may have figured out the reason my chloride is elevated might be due to the

potassium pills I am taking, but who knows? The letter also said that my CBC

and differential are similar to the past? I thought only cars had a

differential, I didn't know I had one (ha). Oh well?? Thanks, Dolores

ohgminion rakshasis@...> wrote:I was lucky in that my husband was

available to drive me to and from

work (an hour out of his way and he worked full-time as well) when I

started blacking out. My worst time was in the first 6 months after

my first symptoms, then it evened out somewhat.

YMMV, but since I had worked with severe back pain (such that I had

to kneel to work at a desk, couldn't sit) for months, blacking out

and sleeping at my desk wasn't too much of a big deal.

The last few years I've been working at home most of the time, and

that helps both with avoiding the commute, and keeping me near food

and drink and medicines.

I don't recall Heidi if you have blood sugar issues, but when my

blood sugar gets low, I basically can't do anything, yet I have to

watch out for high levels too (yet I'm not diabetic, just " glucose

intolerant " and hypoglycemic).

Take care,

RH

> Hi All

> Things just keep getting more complicated over here. I had a few

> syncope episodes last week so metabolism got me in to see the

> cardiologist and it was an interesting visit. He looked at the

results

> from the tilt table and echo and he said everything was normal and

then

> he took my BP which was low lying down and inaudible standing up.

He

> tried taking it by pumping up the cuff and feeling my pulse and

> nothing. He prescribed florinef and referred me to nephrology.

The

> big problem is that the gastroparesis has been so bad that I'm

sipping

> all day just to get in the fluids that I can. A port has been

> mentioned and also talk of " using my GI system " for hydration.

It's

> all changing so fast, my head is spinning. In January I was

working

> and now I can't walk and can't eat food. Everyone is thinking mito

> (due to DD's dx) and if the blood DNA testing comes back negative I

> will go to Atlanta for a fresh muscle biopsy. So in the course of

5

> months I've gone from completely functional to a train wreck. Has

it

> happened this fast for anyone else?

> Heidi

> www.caringbridge.org/ma/heather

>

>

>

>

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