Diagnosed w/Sjogren's :(

July 3, 2012

I was diagnosed this week w/Sjogren's. It adds insult to the injury, another

problem to deal with. The dr said 90% of Sjögren's patients are female, does

anyone know why?

Is Sjogrens an autoimmune disease or is it a condition that can happens when you

already have an autoimmune disease?

Thanks for any advice and input.

July 4, 2012

On Jul 3, 2012, at 9:51 PM,

chloe wrote:

> Is Sjogrens an autoimmune disease or is it a condition that can happens when

you already have an autoimmune disease?

I, too, have been diagnosed with Sjogren's. There is no test fir Sjogren's. But

I have had the terrible problem of eyelids sticking to swelled cornea overnight

which left scarring so bad I can no longer see well enough to drive. This was

the symptom leading to diagnosis of Sjogren's after an extremely painful cheek

(parotid gland) in 2006 led ENT doc to suspect Sjogren's.

General dryness is a symptom of the problems of the nervous system (PANS)

diagnosis, Orthostatic Intolerance.

My eyelid stopped sticking to cornea when taking 1/4 antihistamine 4 times a

day, or some every day.

OI patients have less than ideal levels of blood volume making us extra

sensitive to everything.

Think about it. My blood volume was tested at 75% of normal. Twenty five % less

blood volume than my body needs to function normally means every food, drug,

smell, I eat, take in is a concentrated dose.

My blood volume level is not enough for a normal reaction to normal levels of

even necessary body chemicals such as insulin. Right amount of insulin released

from having eaten anything is too much insulin for my low blood volume to absorb

and distribute appropriately. That's why it helps to avoid most (except green)

carbohydrates which cause more release of insulin than meat, fresh green

vegetables, saturated and mono-unsaturated fats.

Sjogren's to me is a side effect of PANS caused by low blood volume such as

dryness and too much of otherwise normal doses of whatever caused my cornea to

swell (maybe mold in basement). Tiny regular doses of antihistamine resolved the

swelling of my cornea stopping the cycle if swelling and scarring. Thank god.

The other things to treat Sjogren's are the same things that treat, to whatever

extent is possible, Orthostatic Intolerance:

- salt (sea salt added to my unprocessed food);

- lots of water throughout the day;

- no carbs except greens (dark chocolate [with less sugar, no milk] offers

benefits to OI, CFS, FMS patients) and occasionally rice.

Read more about OI and Sjogren's here:

What is Orthostatic Intolerance (POTS, NMH, MVPS):

http://www.cfsnova.com/qnaOI.html

and

Sjogren's Syndrome Foundation:

1-

sjogrens.org/

(They call it an autoimmune disease. I prefer my understanding of CFS & OI to

explain symptoms. tm)

toni

cf-alliance.tripod.com/

from iPod Touch

July 10, 2012

Hi,

" The dr said 90% of Sjögren's patients are female, does anyone know why? "

Sjogrens is an autoimmune condition, caused by the immune system attacking cells

that generally excrete mucus, saliva and other fluids.

Like (virtually) every other autoimmune condition, it occurs predominantly in

females. Typical ratio range from 60% to 90% female. The biology behind that

isn't nailed down yet, altho the thinking tends to be that females are more

susceptible to autoimmune conditions because of their immune systems having to

be ready to allow the growth of an antigenically strange fetus in their body. I

think there has been some work on whether women who have been pregnant have more

autoimmune conditions, but just can't recall at this moment whether there was a

difference or not. I do know that more pregnancies do not make you less

susceptible to autoimmunity.

There was a very exciting research development just recently, showing that

people with a certain HLA type are at much higher risk for autoimmunity in

general and many autoimmune conditions in particular. This risk is in both

sexes. The HLA genes are involved in cell-cell recognition, and in the

development of both cellular and humoral (antibody) immunity, so it makes sense

that some HAL types would be more at risk. The real excitement lies in the fact

that there is only one HLA type that is at high risk. That could oviously allow

for better monitoring of those at risk. Eventually there could be medication or

some form of genetic modification that could lead to the elimination of this

predisposition, but that is decades away at least.

Jerry

July 10, 2012