RE: more sonw coming and had MRI

[Guest guest]

Hi

Debbie,

Yes it’s

been a long winter, and as far as the snow goes we are suppose to get hit again

this weekend, we have had a few days of sunshine in the 50’s which is a

heat wave and that melted some of the snow, but we still have some, it’s

not been the snow so much as the cold very cold, single digit and below, and

that is what my body does not like, I also think I did too much last semester, I

taught a full time 6 week course in the summer then without a break went right

into teaching two classes then three, it was too much for me, when I got my W-2

from the school and told my husband how much I made last year, he said “well

it’s a no wonder you got so sick”. I am not teaching now, they

kind of took advantage of me, being “part time” I think, every time

they asked me to teach a class it was like a week before the class started, so I

in the fall I was told I would know what classes I could teach by Oct. “ya

right” they emailed at the end of the semester in Dec. my husband told

me “did you ever think that maybe it’s time for you to start

working your business at home” I am a beauty consultant for Kay and

love it, it was just hard to let go of the “RN”, but I did, so now I

have more time to go to the doctors J. I saw a neurologist on Tuesday who sent me for an MRI yesterday, I have

more neuro deficits, he just wants to make sure it’s not something else,

like MS, or ?? I know it’s the Sarcoid, I told him I couldn’t

possible have more then one disease or I certainly don’t want more then

one! I get the results on Monday. Actually they will probably be neg. they

always are, however he did say he knew that sometimes it was hard to see NS on an

MRI or in any tests, I like this guy, so either way he is convinced my symptoms

are NS, but having a MRI to R/O anything else out is a smart thing to do. Well

look at me I too went on and on, like you said it feels good! I just started

Lyceria, I wish they would up the dosage as it is helping but not all the way,

he said we would talk about that on Monday, so until then it’s me the

heating pad and the Aspirin bottle, only thing I finds takes the edge off the

pain.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Friday, February 23, 2007

5:53 AM

To: Neurosarcoidosis

Subject: RE:

Re: body collapse

Marla,

I know you have had a rough time of it this

winter too. Longer than I have actually. Anything

helping you? I know I am sleeping a WHOLE lot

which is bugging my husband a WHOLE lot. He took a

fit last week saying that he couldn't take it all

(working and the house). I don't know how yours

is handling it all. If I can remember correctly,

he's a lot like mine! The kids aren't much help

either. They are 15 working. & 19 (who's living

at home in college and working ) and a 22 yr. old

away in college. They just do their own thing

and take care of themselves and that's it.

I know I try as hard as I can to help out with

the stuff around the house but I just get spent.

Whew, I didn't mean this to be a rantfest!!!!

Sorry to lay it on ya! Feels better to get it

out to people who understand though. Thanks for

listening.

Debbie T.

Co-Moderator

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Debbie, I’m sorry

you’ve been having bad days, I know how Not fun that is, and hope you get

some energy back soon, Marla

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of Debbie

Sent: Thursday, February 22, 2007

4:21 PM

To: Neurosarcoidosis

Subject: Re:

Re: body collapse

Hi,

I had a morning just like yours this

morning. I got up fairly early , threw in some laundry, took the

dog out and fed him, took care of the trash, swept the floor, tooks my meds and

I had to go back and lay down. I also got up awhile later did a few more

things and had to rest again. The past few days have been like for me ,

more so than others. The day before yesterday I was in bed for the whole

day.

It is very scary not knowing what is going on with your body

down the road, especially when you don't get many answers from doctors.

At first I used to get very upset and frightened as to what I was going

through. But I found that by getting upset and stressed out only makes it

worse. So try and relax. I know it's easier said than

done.

But we are all here whenever you need support or someone to talk

to. Hang in there.

Hugs,

Debbie T.

Co-Moderator

kimber31_1963

<kimber31_1963 (AT) yahoo (DOT) com> wrote:

I had blood work done less than a year ago and a cbc and chem panal

done a couple of weeks ago in the ER. From what I can remember they

said that everything " looked " good. I don't believe I'm dehydrated

since I drink almost a gallon of water a day. My last fasting blood

sugar was right aroun 90, which is where it should be. I'm not sure

just what is going on, it scares me. And not having insurance and

being able to go to the doctor makes it so much harder. I woke up

this morning was up for about 2 hours or so then had to go lay back

down. Got back up did a few things, sat and read for a while then

had to go lay back down. That time I laid down for about 2 hours.

Was back in bed by 9:30, and just got up to come out here for a few

minutes, but am not going to be able to stay up for long.

The fear of not knowing what is going on with my body is the worst.

But having you all here is such a tremendous help, which is why I

had to get up and come see how everyone is doing.

Take care everyone and thank you for your support. Now its back to

bed to hopefully sleep.

>

> In a message dated 2/20/07 11:39:07 PM Pacific Standard Time,

> kimber31_1963@... writes:

>

>

> > it seems like at times my body feels like its just

> > going to collapse in on itself. I can barely sit up, when I lay

down

> > even that hurts. I'm not sure whats causing it. Am I just

getting old

> > or is it something else.

>

> How long has it been since your MD did a blood panel?

> Do you fight dehydration?

> How is the thyroid?

>

> Here is a site that explains hypercalcemia.

> http://www.emedicine.com/emerg/topic260.htm

>

> You can also search by hypercalcemia and sarcoidosis. In the new

edition of

> Merck's disease book-- (sorry, can't remember the name-) but it

has one

> section on sarc that states that we sometimes overproduce Vit D in

the

> macrophages--and then it deposits and forms granulomas where it

should not be. Another

> article in the same book stated that the scientists are now

looking at sarc as a

> Vit C malabsorbtion problem, and since it takes C to tell Vit D

what to do--

> if either is out of whack (medical terminology ya know..) then we

end up with

> higher calcemia levels in our urine and liver/kidneys.

> If you have granulomas on the thyroid or parathyroids-- the

parathyroid is

> what controls calcium output-- then that has to be looked at.

> I also sent out a site for parenchyml involvement- in the last 60

days or

> so-- and that really explains what happens when our endocrine and

hormone systems

> are captured by sarc.

> Here is that site:

>

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

>

> As most of you know, thru trial and error, I found that much of my

nerve pain

> was being caused by high blood sugars, and dehydration.

> By getting these two components under better control, I've been

able to cut

> out my Neurontin and the Sinemet.

> I swear by MSM Powder to help with the " inside the bone pain "

and

I do

> supplement my calcium/magnesium when my ligaments and bones start

to hurt. I've

> found that the years of prednisone had leached the calcium from my

bones and by

> giving myself a bit more-- it seems to relax all those muscles and

ligaments.

> Your electrolyte balance is crucial also-- so any dehydration

makes matters

> worse. so if you are having problems with hypercaluria (high

calcium in your

> urine) then you can have a 24 hr urine done,== that would confirm

the calcium

> level being secreted-- and it would also confirm your electrolyte

functions.

> (Along with a CBC and Liver Function tests).

>

> Hope this helps,

> Tracie

> NS Co-owner/moderator

>

>

> **************************************

> AOL now offers

> free email to everyone. Find out more about what's free from AOL

at

> http://www.aol.com.

>