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@sarahm73

Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something in that realm?
I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests I asked for were off the charts before I saw my rheumatologist and got a diagnosis through antibody testing. Worth a shot if you haven't explored this avenue.
I feel for you and know the struggle to find answers, living in a body that doesn't feel like your own anymore. So thankful to have found some answers, and still uncovering more. Hang in there!

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Replies to "Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid..."

I salute your efforts. Sometimes in life you just have to figure out how to do something yourself without waiting for others. Or find people in a similar position and take on the world together.
As long Covid becomes more known and pharma companies continue getting FDA approval in the long process of drug approval, more solutions will come. There’s a lot of money to be made by who gets into the market first, like those new weight loss drugs.

Sounds just like me. I am pretty sure the vaccine started this and it snowballed. I now am a bundle of auto immune diseases

I've had Covid for over a year, but the symptoms have been mild. Mainly loss of taste and smell

Since symptoms started appearing shortly after the vaccine, I also question whether the vaccine was the cause.

Every time I have an appointment at the VA hospital in Madison, Wisconsin they ask the same question "Would you like to have your Covid booster shot today?"

My reply is always the same "Thanks, but not today. I'm still undecided."