Re: Re: Scleroderma Question

April 29, 2008

Thanks so much for answering my question. It means so much, and makes me

feel less alone to realize that others are dealing with these problems as well.

Best of luck to you, and returned health!!! Gail

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

April 29, 2008

Gail,

I too have Scleroderma. My Esophagus is involved and in the very beginning I

had problems with my lungs(scarring that has not gotten any worse). I was

diagnosed at 22 and I am now 34. I still have problems with swallowing and a dry

cough that comes out of nowhere. I have had my Esophagus stretched 2 times and

it has helped with the swallowing. I tried several medications that were

supposed to help with motility, but none really made a difference. I can tell

you though that I have gotten better, not worse, and to answer your question

about other organs being involved....They can be in some cases, but in my case

my esophagus is the most frustrating. I have had problems throughout the years

too with my stomach... I am always either constipated or I have severe

diarhea(SP?) The doctors have said it is part of the disease. I can eat

something one day and be fine and eat it the next and have a bad reaction. I

also have dermatomyositis which is accompanied by a rash and I have

muscle weakness (I can't get up from a seated position and I have poor

balance). Anyway hope I answered some of your questions. The most important

thing is don't let it get you down and STAY active as possible.

ONYX8257@... wrote:

I was diagnosed in early February with Diffuse Systemic Scleroderma,

as well

as Raynauds and Sjogrens. Had been to many many doctors over a period of 9 -

10 months before finding my answers in Boston. My question is, and I would

appreciate your input, is when you have esophagus involvement, like reflux,

difficulty swallowing, choking on water, etc. etc. does that necessarily mean

that

you are going to have severe organ involvement, or can you have the esophagus

trouble and not have other organs involved.

I have had a pretty bad sore throat for about three days, nothing I can

really pinpoint to a cold or anything, terrible, at some times relentless dry

cough, and today, all day it just seems like I cannot swallow properly and like

food is kind of " sliding " so to speak down my throat rather than being pushed

down - hope this is making some sense.

Appreciate anything anyone can tell me. Secondly, is this permanent, or if I

improve, will this part of the disease improve as well? Anthing anyone has

used or taken to ease some of the discomfort and made swallowing easier?

Thanks Gail

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

April 29, 2008

Hi Gail;

I had bad acid reflux as well as swallowing problems.The latter

struck long before the disease and on top of that everything I picked up

seemed to fall out of my hands.It was a stading joke in the family that

" Lynne " was not to touch anything made of glass.It was as if I could not

properly feel how tight or loose I was holding things.I was always

choking on the simplest thing that I tried to swallow at least a year

before having any other trouble. After a few months I had a badly coated

tongue and could not taste anything.That stayed with me for over a year

and doctor just said it was a yeast problem and gave me Diflucan which

did not help much at all.When the SD hit ,it came on fast.It took years

of fooling around with different antibiotics and dosages but today I am

in full remission.I was taking mino 200mg a day and today I wish that I

had used a lower dosage as the yeast now will not leave me in peace,not

due to the disease but to the too heavy dose of antibiotics.In fact I

did not get better until I lowered the dosage to 100mg 3 times a

week,fixed the celiac problem I did not know I had and stop eating any

food with vitaminD.After changing the protocol I was in remission in 18

months. Lynne G./SD

> I was diagnosed in early February with Diffuse Systemic Scleroderma,

> as well

> as Raynauds and Sjogrens. Had been to many many doctors over a period

> of 9 -

> 10 months before finding my answers in Boston. My question is, and I

> would

> appreciate your input, is when you have esophagus involvement, like

> reflux,

> difficulty swallowing, choking on water, etc. etc. does that

> necessarily mean that

> you are going to have severe organ involvement, or can you have the

> esophagus

> trouble and not have other organs involved.

>

> I have had a pretty bad sore throat for about three days, nothing I can

> really pinpoint to a cold or anything, terrible, at some times

> relentless dry

> cough, and today, all day it just seems like I cannot swallow properly

> and like

> food is kind of " sliding " so to speak down my throat rather than being

> pushed

> down - hope this is making some sense.

>

> Appreciate anything anyone can tell me. Secondly, is this permanent,

> or if I

> improve, will this part of the disease improve as well? Anthing anyone

> has

> used or taken to ease some of the discomfort and made swallowing easier?

>

> Thanks Gail

>

> **************Need a new ride? Check out the largest site for U.S.

> used car

> listings at AOL Autos.

> (http://autos.aol.com/used?NCID=aolcmp00300000002851

> <http://autos.aol.com/used?NCID=aolcmp00300000002851>)

>

April 29, 2008

Lynne, I understood that vit. D should be eaten with food containing a little

fat because it is a fat-soluble vitamin. Why was no food with vit. D necessary

in your case? Does vit. D cause side-effects for you?

Thanks,

Re: rheumatic Re: Scleroderma Question