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Just heard back from my Rheumatologist and I do have Sjogren's.
The doc said he sees these two conditions together frequently. So now I have four auto-immune issues. My blood protein is normal and that indicates a low level of activity with the Sjogren's. Hopefully, I can keep inflammation under control and that will help keep the Sjogren's at a lower level of activity. I will have to check in every 6 months to test for lymphoma, a risk with this syndrome, or if symptoms exacerbate.
As Gilda Radner said when diagnosed with cancer, "It's always something."
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
Sheila, I was diagnosed last winter with this as well. There are 2 versions. One with just sicca (dry everything, and I mean everything!) and one with sicca plus other neurological issues. I think the tennis player, Venus, has this.
I am starting to see how this is all probably connected to the leaky gut syndrome. I started taking Jarrow's NAC Sustain ( n-acetyl-L-Cysteine) a couple of months ago as there is at least one study to show that it's helpful for Sjorgren's. My eyes and mouth are not nearly as dry. It's also a good preventative of respiratory problems, which I'm prone to.
There is a pretty good Sjorgren's support group online. Best of luck!
I am starting to see how this is all probably connected to the leaky gut syndrome. I started taking Jarrow's NAC Sustain ( n-acetyl-L-Cysteine) a couple of months ago as there is at least one study to show that it's helpful for Sjorgren's. My eyes and mouth are not nearly as dry. It's also a good preventative of respiratory problems, which I'm prone to.
Hey that is great news that the NAC is helping!
Sheila, sorry about the news, albeit you are on the right path eating plan wise, and now with the supplements via the genotypes and methylation cycle. you can minimise the impact these issues have.
Hugs that it was news you didnt want just now.
xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I'm sorry to hear that a Sjogrens diagnosis was confirmed, but at least you were able to dodge the RA diagnosis. The combination would have really been a bummer.
I have a hunch that as good as you have become at controlling your diet, you'll be able to minimize the symptoms, and hopefully significantly slow down any progression.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for the recommendation, Hopeful. I'll try it.
You're right, Tex, Sjogren's isn't nearly as bad as RA. I'm going to use the information I got about methyl folate and methyl D3 plus info about the Jarrow Sustain and add them to my vitamin regimen. Thanks, Gabes.
I wonder if there is a limit to the number of auto-immune disorders one person can acquire? Joe has quite a few, very serious ones. I have four.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
Sheila
there are many here with multiple AI issues...
I had 4 AI issues Dx'd within 4 years, all by age 44.
(added with major dental issues)
Hence why I went searching for further answers, reducing inflammation was not enough, I needed to figure out root cause (causes) and apply the fixes...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Sheila, sorry for the additional issues you have to deal with.
I've often wondered if I have it but really don't want to look for something else to add to my list of woes. My dry eyes and dry mouth continue. I have dry skin and hair but don't know if it's severe enough to call a serious issue- I just never had it before now.
I read the description of Jarrows NAC Sustain but didn't quite understand it. Is it helpful for the dry everything problems? I didn't think there were any remedies for sjogrens, is it important to know if you have it? My dentist gave me Biotine but there was an offending ingredient so I tossed it after it sat in the drawer for a year. I use lubricating eye drops and found contacts help with the burning sensation. Eye doc said the insides of my eyelids had inflammation that was irritating the eyeball. The contacts act as a barrier. So far it's helped- not solved the problem but lessened the severity. I used steroid drops, restasis, punctal plugs and none seem to help. One of the plugs came out a few months ago. At my last eye visit he noticed the eye without the plug had more inflammation even though I can't tell the difference. Don't know if it's just something to deal with or something more.
What did they do to dx it?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
It was a routine eye exam that tipped us off that I have it - chronic dry eye. As I read about the symptoms, I realized that I had so many of the primary and secondary ones. Thankfully, not so much with the dry mouth but definitely dry throat and chronic winter cough.
