Recently diagnosed with autoimmune disease - looking for support

Hello @mils Sounds like you’re on a long, difficult road, but you’re doing all the right things. You’re asking questions and looking for support. I know you’ll find it here.
I have an unusual autoimmune disease, inflammation of the brain. It was relatively new so no one knew anything about it. After prednisone, CellCept (an immunosuppressant) , rehabilitation and lots of physical therapy, i got onto the right track. But flares do come and go. I’ve learned to use the prednisone in order to manage these flares. But, I can tell you, they are so depressing when they come. I’ve been seeing my therapist again and she is able to help with the feelings. I’ve slowly learned to just live every day and do what I can.
I forgot to mention that you might try to see doctors at a major medical center or university hospital. That’s what I had to do and it has been great. The doctor knows exactly what I have and how to help.
I”m so glad you found Mayo Clinic Connect. Everyone is so willing to help each other!
What have you got coming up this week?

Hello @krcc I’m so sorry that you’re still having a difficult time. Are you seeing specialists for your care? In her comment above, @colleenyoung mentioned some discussions on MCTD that you may wish to follow
https://connect.mayoclinic.org/comment/737087/
Are you seeing a rheumatologist who specializes in autoimmune diseases?

Yes, I have a Rheum who coordinates MCTD care and a specialist for every other affected organ.

Autoimmune diseases are weird; before diagnosis, I called it "traveling joint disease." However, I wouldn't wait for diagnosis to change some things, as it always is about chasing symptoms. If your lungs are clear and the PCP sees nothing, it is ok. I like moist heat (microwaveable bed buddy), lidocaine patches, and sometimes a cold patch. Magnesium ointment or pills (350mg daily), biofreeze can also help. Diet to non-processed, low sugar, moderate wheat, potatoes, tomatoes, diary--eat good quality foods. Exercise: attached is a you tube person I like, whose movements are very much like PT (which I also suggest) and/or a massage. If your images do not seem like there is back or shoulder damage, a chiropractor might get things aligned again. Ergonomics, posture really matter, here. I have a spring type mattress with a 3", 3lb density topper. Look at your situation and see if there's anything else that may have caused overuse. I am on zoloft to help with focus, use EFT tapping and intentional breathing to destress. Take care.

I made a comment and forgot to add the link to Dr Jo. https://www.youtube.com/watch?v=aGxtFgyTbKQ

MCTD shows as a “speckled pattern” on lab tests. I have a combination of lupus, scleroderma and myositis. The classic three for MCTD. I also have Raynaud’s, inflammatory arthritis, gastroparesis and GI dismotility. The Mayo Clinic, Lupus Foundation and Scherderma Foundation all offer good research sources.

Hi Colleen, thank you for your interest, I am currently waiting on some blood work. The rheumatologist says I have to get blood work done every three months to see if everything is stable or if I developed some specific antibodies that will change my diagnosis into a more defined one. It looks like, their goal for now is to make me live a better life, free of pain or at least with as less pain as possible. So far, after one month of Prednisone and then 4 months of plaquenil, they were able to do that. With this new flare, I was thrown out "balance" both mentally and physically so I am planning to go see the doctor again, not sure if they will change my treatment. Since I have written my post here, my symptoms have improved on their on, after taking some prednisolone and some advil, but they still come back here and there. I hope my experience helps others with UCTD, since I have noticed that there is very few information online.

Thank you @jilliemo12345 , @1950 , @krcc , @becsbuddy , @marye2 for sharing your stories and tips for getting through tough times. From what I read, everyone experience is so different and I guess that's why my doctor can't always give me an answer on how my disease might progress. I still have to come to terms that this is something I might have to live with for the rest of my life, so hearing your stories and seeing that, despite ups and downs, you are trying to make the best of it, makes me feel better.
I'm glad I found this support group

Hi @marye2 , thank you for sharing your experience. Some of the things you have mentioned help me as well. My microwaveable heating pad was the only thing that helped me when I still was undiagnosed and same goes for some icy hot patches that would relax my muscles and calm down inflammation. But obviously they were only temporary so I have had days when my life was completely disrupted since I didn't have any medication that actually helped me until I saw the rheumatologist. But I totally agree with you about the fact that, more than the diagnosis, is about treatment of the symptoms, that's how I felt since the beginning. I didn't care if they didn't have a name for whatever I was experiencing, as long as they were able to find something that would help me go back to my regular life.
Thank you again for sharing!

My brother’s diagnosis is UCTD. He says no matter what it’s called it all feels the same. Luckily his symptoms haven’t progressed like mine did. 💜🦋