RE: florinef, fluids

[Guest guest]

Heidi

I can't answer your question, but wanted to say how sorry I am that

you are having to deal with so many new things at once. I'm also

sending big hugs your way.

laurie

> 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

[Guest guest]

Heidi,

I am so sorry that you are experiencing so much so fast. Although my

symptoms were not the same as yours, the escalation of my issues happened

over a weekend. On Friday, I was able to work. By Monday, my career was

basically over and although the company I worked for waited patiently for me

for 6 months, when I tried to go back, I was unsuccessful. At that point, I

went on permanent disability. The symptoms did lessen and I was more

functional at home but have never been able to return to the workforce.

When I started taking the supplements, although it took time, I began to

feel better although I have never been best and my I have some very serious

ups and downs. I hope you can soon get answers and some relief.

Alice

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[Guest guest]

Hi, I definitely can relate to the statement " in January I was working and now I

can't work " , the only difference is that for me it was in 2004. I went on a

three day cruise with a friend from work in August and one morning in September

I got out of bed and my feet just wouldn't go. I called friends and theycame

right over and took me to the neurologist who promply gave me more Parkinsons

med, which just made this worse. I always had perfect attendance but I

was off work several times starting thru December 2003. When I moved to this apt

January, 2004 I could still carry a few lightweight items thenin February I just

coundn't make it to my workstaation. They finally put in for short-term

disability which continued thru August. I am now classified as a non-working

employee so I can have company benefits, which consists of my Cigna ins I pay

$91.76 and EDS picks up the balance. I thought things were going better for me

now but on last report there is still blood in my urine (more since last week),

when they did the abdominal/pelvic CT a suspicious " shadow " in my colon so I am

heading to a gastro I had seen years ago, as the doctors feel that there is a

possibility that I may need to have a colon biopsy done. I see Dr. Feagen the

13th so I guess I will know more then. I am nauseated and having abdominal pain

again this am and my feet are still swelling. All day yesterday and again this

am I have been having, what I call heart cramps?

We had some nasty clouds here last night and both Lawrence and Topeka had

storm warnings. My son told me that a man in lawrence was fishing in or near

" s Lake " and pulled in a pipe bomb with powder in it?? In the famous words

of Bugs Bunny, that's all folks. Dolores

heidicoleman2002 mom2colemankidz3@...> wrote:

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

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

---------------------------------

[Guest guest]

Heidi,

I am sorry you are having so many issues all coming at you at

once. I don't have any answers for you, but do have experience with the

fluids and the florinef. I started having a lot of trouble getting

fluids in last year, although I can still eat (strange, but that is

mito!). My BP was low, with the autonomic issues. I was put on florinef

for awhile, which didn't do much for me, but hopefully it will for you.

Last August, a G/J tube was placed for hydration. For the past 2 1/2

months, I have been back on IV's twice a week, along with the J tube

hydration. A port has been talked about, but I might find out more when

I see Dr. Korson next week. Take care and know we are all here for you.

Hugs,

a K.

On Thu, 09 Jun 2005 11:38:03 -0000 " heidicoleman2002 "

mom2colemankidz3@...> writes:

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

[Guest guest]

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

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is automatically moderated or removed depending on the severity

of the attack.

>

>

>

>

> ---------------------------------

>

[Guest guest]

I hear you on the low blood pressure - I don't know how many doctors

have told me " 90/60 isn't that low " , yet at the time I was normally

150/100, so that seems like a big difference (and I was passing out).

Take care,

RH

> 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 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.

> 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 RH

I can't drive because of the double vision but the syncope would keep

me off the road as well. Add in the hyperreflexia, strike three. I

have diabetes and am insulin dependent. My blood sugar was 191 after

I came to with my first syncope so it wasn't my sugar. I don't have

any classic dizziness with the low BP (blurred vision, maybe hearing

problems, a bit of tremoring, then sudden loss of consciousness).

Neuro still wants to check a few more things but the cardiologist is

satisfied with calling it orthostatic hypotension after the little

show on Wed.

I'm curious, what's the deciding factor to call sugar issues " glucose

intolerance " rather tha " diabetes? " Is it the Hgb A1C? Fasting

levels? Glucose tolerance test?

Thanks

Heidi

[Guest guest]

I believe the ast and alt are related to liver function.

Dolores doloresskeet@...> wrote:

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

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is automatically moderated or removed depending on the severity

of the attack.

>

>

>

>

> ---------------------------------

>

[Guest guest]

Thanks, I have serched thru everything I could to try to figure it out.

Dolores

Bristow lanebristow@...> wrote:I believe the ast and alt are

related to liver function.

Dolores doloresskeet@...> wrote:

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

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is automatically moderated or removed depending on the severity

of the attack.

>

>

>

>

> ---------------------------------

>

[Guest guest]

I was told that for the 3 hour GTT, failing one number was

considered " glucose intolerance " , and failing two or more numbers was

considered diabetes. My blood sugar was fine fasting, and at 2 and 3

hours, but at 1 hour it was high.

My MDA neuro has continually run HbA1C's on me, and they seem to be

fine, although if I have blood sugar levels bouncing around, I'm not

sure if the HbA1C would be bad in that case.

BTW, double vision is one of my main symptoms, and the first control

I had of it was Mestinon (generally used for myasthenia gravis, which

they thought I had at the time). Taking Mestinon allowed me to drive

with no vision issues. My syncope occurs especially after a big

lunch, so I learned to avoid driving for lunch time.

If I'm thinking of it, after I have a syncope episode, I take my

blood sugar, blood pressure, and pulse. Often my pulse is under 60

bpm, my blood pressure is under 100/60, and my blood sugar is under

70. The combination seems to be a bad thing for me, which may make

sense as pulse is how fast blood is flowing through the body, and the

blood sugar is the " energy " . It's rare I see high blood sugars at

home, but I've never been above 200 so I'm not sure if that would

cause symptoms.

Take care,

RH

> > 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.

> > 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 RH

> I can't drive because of the double vision but the syncope would

keep

> me off the road as well. Add in the hyperreflexia, strike three.

I

> have diabetes and am insulin dependent. My blood sugar was 191

after

> I came to with my first syncope so it wasn't my sugar. I don't

have

> any classic dizziness with the low BP (blurred vision, maybe

hearing

> problems, a bit of tremoring, then sudden loss of consciousness).

> Neuro still wants to check a few more things but the cardiologist

is

> satisfied with calling it orthostatic hypotension after the little

> show on Wed.

>

> I'm curious, what's the deciding factor to call sugar

issues " glucose

> intolerance " rather tha " diabetes? " Is it the Hgb A1C? Fasting

> levels? Glucose tolerance test?

>

> Thanks

> Heidi