Welcome and questions

[Guest guest]

Hi all! I want to welcome all the newbies. I know you will find a

caring " family " here. Never be afraid to ask any questions. I missed

many of your intro's, as I was away from my computer for awhile. I had a

central line put in last week, a one night stay at the hospital, and then

had to stay with my family for awhile, due to a fire in my apartment

building. Even though my apartment was fine, I needed to stay awake

from the lingering smoke smell. I am now back in the building. The fire

was at the other end of the building. I feel so lucky to be one whose

apartment was not damaged.

My first question is if anyone else has temporary paralysis. I

do get this on my left side when I have major SLE's (stroke like

episodes), but lately I have been getting either paralysis or the feeling

that two or more elephants are sitting on each limb and I can barely move

it due to their weight. :-) This has been happening after a CT scan w/

contrast, so I was told no more contrast. It also happened after I had

my central line placed. We are starting to think my body is going to do

this with most tests and/or procedures. Any one else experience this?

I also wondered what everyone did with the supplements when given

an antibiotic that has to be taken so many hours before and after

vitamins. The one I am usually put on is taken 4 times a day. With my

supplements, twice a day, it is hard to fit everything in. I don't want

to stop the supplements every time I go on an antibiotic. I am limited

on antibiotics due to my many allergies. Does anyone have problems with

this? I have been on antibiotics a lot lately for bronchitis, and have

to go back in today.

Thanks in advance and sorry this was so long!

Smiles,

a

[Guest guest]

a

Thanks for your input. I have decided to e-mail my neuro in case there

are any tests he wants done before my appointment.

I'm glad your apartment wasn't damaged. I hope the smoke smell is gone.

How are you doing with the central line?

As for antibiotics, I am lucky that I am not allergic to most, only

pain killers, but have set the alarm and taken things in the middle of

the night. Not my favorite thing to do, but it worked.

laurie

> Hi all! I want to welcome all the newbies. I know you will find a

> caring " family " here. Never be afraid to ask any questions. I missed

> many of your intro's, as I was away from my computer for awhile. I had a

> central line put in last week, a one night stay at the hospital, and then

> had to stay with my family for awhile, due to a fire in my apartment

> building. Even though my apartment was fine, I needed to stay awake

> from the lingering smoke smell. I am now back in the building. The fire

> was at the other end of the building. I feel so lucky to be one whose

> apartment was not damaged.

> My first question is if anyone else has temporary paralysis. I

> do get this on my left side when I have major SLE's (stroke like

> episodes), but lately I have been getting either paralysis or the feeling

> that two or more elephants are sitting on each limb and I can barely move

> it due to their weight. :-) This has been happening after a CT scan w/

> contrast, so I was told no more contrast. It also happened after I had

> my central line placed. We are starting to think my body is going to do

> this with most tests and/or procedures. Any one else experience this?

> I also wondered what everyone did with the supplements when given

> an antibiotic that has to be taken so many hours before and after

> vitamins. The one I am usually put on is taken 4 times a day. With my

> supplements, twice a day, it is hard to fit everything in. I don't want

> to stop the supplements every time I go on an antibiotic. I am limited

> on antibiotics due to my many allergies. Does anyone have problems with

> this? I have been on antibiotics a lot lately for bronchitis, and have

> to go back in today.

> Thanks in advance and sorry this was so long!

> Smiles,

> a

>

>

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>

[Guest guest]

Joanne,

Thanks for your response. I have had many SLE's before, but just

started to have the same feeling after procedures. I am sorry that you

have to go through it as well, but it is nice to know we aren't alone.

:-)

I have a diagnosis of mitochondrial Cytopathy COX deficiency

(complex IV). It has been brought up that I might have more complexes

affected. I had the muscle biopsy in 1995, at age 18. I was diagnosed

then, but technology has come so far now, that more can be picked up. I

saw Dr. Korson in June and he is doing some blood work, but we are not to

concerned about what else may be going on.

Don't worry, I have the mito memory too! :-)

Smiles,

a

On Tue, 19 Jul 2005 07:58:34 -0700 " Crook " pjcrook@...>

writes:

Hi a,

I am glad that your apartment wasn't damaged. And that you are Ok. To

answer your question: Yes I get paralysis when I have what I think are

SLE's. (I don't have a dx yet.) Mine are usually were I can't move at

all

for between 10 minutes to two hours. Then when I am coming out of it I

get

the real heavy feeling that you describe. It is a major undertaking just

to

move a finger or open my eyes. Last time it happened my husband tried to

get some fluids down me while I was out. He was scared and thought it

might

bring me around. Anyway, I remember the liquid going in my mouth and I

couldn't even swallow. I thought I was going to choke. I couldn't even

cough. He promised never to do that again. It scared me. I knew I

couldn't move, but not even being able to swallow was terrifying. Mine

can

be brought on by medical procedures too. It is like they are the straw

that

breaks the camel's back. If you don't mind me asking do you have a dx?

And

if so what is it? (Sorry, I am sure you have mentioned it before. It is

just my mito memory)

Joanne

[Guest guest]

Hi a,

Glad you are safe and have been able to return home.

Both of mmy girls have had temporary paralysis to

differing degrees. Dr. Whiteman has called the

" episodes " during which can't speak or move

her eyes temporary paralysis. (This is a big part of

the reason she has Brooklyn; to call us when

can't speak). lies has also had similar issues

with her arms and legs. has, on more rare

occasion, had similar complaints. Thay have always

been related to stroke-like events or when they were

extremely stressed, ie inpatient, high pressure

deadlines, etc. The frequesncy has lessened

remarkably since I started home schooling them. We

also notice significant improvement after their COQ10

dose was raised dramatically. lies and

have had major, generalized problems with almost every

procedure. Breathing issues with contrast,

neuromuscular and cognitive changes with propofol and

several other anesthesias.

When having to " time " supplements and other meds, we

adjust the schedule. They don't like it because they

feel like they have to take something " all the time " .

But that is the only way I can get everything in.

has to be premmedicated because of antibiotic

allergies which adds extra med times ot the mix. We

also give meds durign the night (around the clock)

nwhen antibiotics are given.

--- a C Koch kckoch76@...> wrote:

>My first question is if anyone else has temporary

paralysis. I do get this on my left side when I have

major SLE's. Any one

> else experience this?

> I also wondered what everyone did with the

> supplements when given

> an antibiotic that has to be taken so many hours

> before and after

> vitamins.

> T

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris