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Old 01-13-2019, 04:33 AM   #1
sarahsweets
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My Mood: Is anyone else familiar with Sjogren's disease or have it?

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Default Is anyone else familiar with Sjogren's disease or have it?

I developed what a doctor called "autoimmune arthritis " after being really sick two years ago and everything seemed to go to hell in a handbasket. Joint pain and issues to the point that I needed two carpal tunnel surgeries and joint replacement surgery in my right hand(three surgeries in 2018). Problems with my knees, raynaud's syndrome, extreme dry eye, dry mouth, cavities, fatigue. Hair breakage, temperature regulation issues all sorts of stuff.

The first rheumatologist I went to was very nice and everytime I would actually see here there were no active flare ups going on so I would bring pictures of my swollen joints. I am very active despite this and have three kids so being laid up doesnt work for me. ( I was under the care of an endochrinologist at first due to a lump on my adrenal and thyroid glands but he basically had nothing more to say about it). She talked at length about sjogren's and I have had so much blood taken its ridiculous. She was almost sure I have it but then the bloodwork would come back inconclusive or not show all the right markers for this and other autoimmune issues. But she still believe me.

I cant take any NSAIDs what soever because : I had gastric bypass, ulcers, and Barretts esophogus. So she was kind of aloof about where to go from there. I have had MRI's of the brain and knee, and catscans and nuclear scans. All the doctor's know something is up but no one seems to the results to line up. I started seeing a pain management doctor for deltoid tendonitis of both shoulders, and joint issues in both hands and an orthos for the knees. Received cortizone injections in both thumb joints, one knee and one shoulder.
The PM doctor sent me to a rheumatology specialist and I saw her last week. She was very very nice and thorough but she is sending me for more blood work. She agreed that sjogren's sounds right but I fear the bloodwork wont bear that out, then what? Do I stop qualifying for PM treatment or rheumatology treatment because the bloodwork doesnt pan out? I feel like they will think I just plucked this weird name of a disease off of web md because I thought it sounded good. (like who will have ever heard of this if they were not told about it?) Is everything one lost cause? I am starting to feel this way. I do not lay around because of pain, I do my best to push through it. I am only 43 (old woman to some, but I do not feel that way) so I refuse to accept a life of chronic pain and convalescence. Anyone care to shed some light or share their own experiences with this or any autoimmune issues?
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Old 01-14-2019, 10:25 PM   #2
htoun
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Default Re: Is anyone else familiar with Sjogren's disease or have it?

I unfortunately can shed any light on sjogren's I'm being tested for it right now. I already have hashimotos which is an autoimmune disease that takes out the thyroid. They have been trying to find my correct dose of throxian for 23 years. It's getting old. It took a while for them to notice it was hashimotos and not just an under active thyroid. Because autoimmune isn't constant and there is technically nothing wrong with my thyroid some times it actually makes thyroxan which really mucks up my blood numbers.



My new doctors office (long story) treat me like a fat hypochondriac which is annoying to say the least. My endocrinologist wrote a note asking them to test for sjogrin's. I was complaining that I was thirsty and dry. Drinking water makes the thirst greater. Some days I'm drinking over 4 litres which is just crazy. First test came back inconclusive. So off to see a other specialist fun. Ton of blood work, eye doctors appointment with added tests and a scan of my saliva glans to be done. No results yet and I am still waiting for an appointment for the scan.



So yeah no help what so ever but darn it is nice to know that someone else knows that name. I will let you know if I find out anything about it.
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