MCTD (Mixed Connective Tissue Disease)

Welcome, @starbright. i moved your post to this existing discussion about MCTD.
- MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I did this so you can read through some of the recent posts and connect easily with other MCTD members like @jirehprovides @paktoledo @rarelybees2889 @margar1 @adlttl123 @kimegraves @yellowdoggirl @boconn89 and others.

Starbright, I can understand the physical challenges undermining your mental health too. What do you find helps?

Thank you. My liver and kidney and neurological symptoms are now being affected. I don’t really see a turn around as the anti-U1-RNP there are only 50,000 cases in the U.S. less that 1.9 percent it’s called a very rare autoimmune disease that overlaps all of the other autoimmune diseases. I am not afraid to die but I will put this out there, I never in 50 years had an abnormal lab and now showing at some point I had a heart attack. I have slowly started making lifestyle changes but untimely have gone downhill since June 2021 upon developing Covid. I have been sick and could now figure out why as it mimics major depressive disorder as well. It got so bad I was hallucinating that I was seeing and hearing demons and really believed it until my doctor ran a bunch of labs and found it was organic in nature. I went temporarily paralyzed from my feet to my neck for 15 minutes last week then the sensations came back. Sustained a concussion from that. Seeing a Rheumatologist Tuesday

Thanks
Knowledge is power
I am trying to understand it better too

Also Hugs to you...

I caught covid in March and it hit my cardiovascular system. EKG signals indicated possible previous heart attacks. I had a nuclear stress test that ruled them out as artifacts (no damage, just how my heart is wired). If you haven't had a stress test for verification, you can even get one without the treadmill/bike part. I've had autoimmune diseases starting more than 30 years ago. It is a challenge to find things and friends to escape with. Covid and autoimmune diseases are very isolating.

Dear Kayabbott: Question. Did you get the vaccine previous to the Covid? William

I am fully vaccinated and got the booster 6 months before being infected. I was hit with a large viral load (sitting next to the covid positive cyclist for 2 hours) and glutened at the same time (celiac), so a double cytokine storm. Being older with some autoimmune diseases likely means my immune system isn't as sturdy as a younger person. My stress and other tests all came out negative for any damage, so I'm good to start ramping up the exercize.

Dear KayAbbott: My concern is that maybe the cytokine storm may have been due to the vaccine and not the disease. There are so many reports of vaccinated people have blood clots and other strange heart symptoms. It is truly an issue that we know little about. Glad it worked out well for you. William

The covid vaccines and booster for me resulted in minor inflammation that went away within 3 days. I had fever and chills for the first Moderna shot but just a bit tired for later vaccines and boosters. I have a few autoimmune diseases and suspect my covid hit wouldn't have been as bad if I hadn't been glutened the same day as covid exposure. I know that there is a very minor risk of reaction to the covid vaccines, including increased blood viscosity. I've had two friends die of heart attack/myocarditis after getting covid, and two others with heart damage. I wonder if some of the blood clotting risk could be minimized by taking aspirin or other blood thinner when getting covid or vaxxed/boosted? CDC, NIH, and Nature all have online risk/benefit analyses of getting vaccinated/reactions. Unfortunately, most people don't know how science works (I was a research scientist) and this combined with miscommunication/misinformation has resulted in some distrust of science. The distrust started a few decades ago with climate science politicization. Or actually, centuries ago when scientists reported things people don't want to hear.

I have found it officiate too. I have not starany meds yet. Almost thru a bad flare up. I advise you to rest WHENEVER possible. You have to take care as no one understands. It’s debilitating when you are in one. You have to cut back on everything else or you don’t get better. Good luck.