Mary Alice from Virginia

Greetings! I’m trying to learn as much as I can about Sjögrens. I’ve had it for a few years now. I have other “relatives” such as Scleroderma, hypothyroidism, Gastroparesis. In the last year, I began to lose weight until I was down to 109 from 143. I have only been able to get to 115. I need hernia surgery but the surgeon won’t do it until I put on more weight. My vagus nerve was severed in 2005 and since Sjögrens, I can’t taste most foods and my mouth feels gummy and nasty. Can anyone identify?

Thanks :blush:

Hi Mary Alice! I am new here also, and trying to learn all I can. I have found that I definitely learn more from fellow sufferers than from doctors. And although each person’s journey may be different, we all share the same desire…to have the best quality of life we can! People here have been very kind and informative. So welcome aboard!

Welcome Mary Alice!

It’s not uncommon for people to have numerous autoimmune disorders. It sounds like you’ve really hit the jackpot. Not the good kind.

Did you know that you can search the site if you have specific questions?

Thanks for the warm welcome.

I agree that the best information comes from people who are expecting the same problem. I joined FB forums on Sjögrens, Gastroparesis and Scleroderma but those sufferers were far worse off than I. Most of them were near critical condition- in and out of the ER or hospitalized very often.

I feel that the disease process for me is significant but, other than fatigue and depression, not as disabling as they portrayed.

For this forum, I wanted to find out specifically about the mouth - how odd it feels at times and how food had little to no taste. Is this just the way the disease is? I don’t take any Rx for Sjögrens.

I will look around in the search area to see if I can find some answers.

Again, thank you :grinning: