I was just diagnosed with SCLS last week thanks to an attack triggered by Covid-19 (OCT 2022) that landed me in the hospital for 7 days. I'd had 5 previous episodes over 4 years of what I was calling my mystery inflammatory episodes which included symptoms heavy fatigue, muscle pain and weakness, elevated heart rate, inability to walk more than a few steps or stand longer than a minute, out of breath with slightest movements, swelling in face and limbs, weight gain, nausea. I had an episode after each of my Moderna vaccines. The first vaccine wasn't too bad. I was perfectly fine the first three days and then it started to hit. I was able to just sit and relax in a chair and as long as I didn't try to do anything, I was ok. The second one had me bedridden and because of nausea I couldn't even relax. and had a sense of something being very very wrong so I sought care at urgent care. They noted my elevated heart rate, did an ecg, gave me nausea meds and sent me home. No blood work; they thought it was just an ordinary vaccine reaction. Interestingly, I did not have episodes after either of my subsequent Pfizer booster shots, including the bivalent. Yes, I was worried about getting the vaccines but with having these mystery attacks triggered by illnesses... I was more concerned that Covid-19 would kill me... and that my response to vaccine would be less than my response to the actual disease.
Three weeks after my final Covid vaccine I contracted Covid while vacationing in Canada. Sore throat, some GI symptoms, and a fever hit me while driving from Montreal to Toronto where I picked up a home test and tested positive for Covid-19. We cut the vacation short and headed straight home to WI. Took us two more days of travel and by the time we got home on Saturday around noon I went straight to bed. My fever had already broken but I had those old familiar symptoms of complete exhaustion where even rolling over was a struggle. My face was already swelling. I felt horrible so went to the ER just hours after getting home.
WBC H RBC H HGB H. HCT H Abs Neutrophils H. Sodium L Albumin L
They did a chest X-ray and ECG, gave me an IV and sent me home.
The next day I returned to the ER because...well, survival instinct. I felt awful. As bad, probably worse than the day before. I was admitted and remained hospitalized for 1 week due to low sodium and many blood abnormalities. My Covid symptoms were mild. My fever never returned. Mild sore throat. No cough or congestion. I kept telling every I felt that my Covid symptoms were mild, but it was this other thing that happens to me. Extreme fatigue. Couldn't even feed myself. Couldn't shift my pillow or adjust my blanket. Had trouble even sitting upright on a toilet. They kept giving me IV after IV because they thought they were treating for dehydration. I didn't have my SCLS dx yet. Instead my sodium kept dropping and I kept swelling. I gained 30 pounds that week. My entire body was swollen and tight.
Same abnormal blood as above but also CK H Troponin H Aldolase H D Dimer H Lactate Dehydrogenase H Ferritin H Sodium L (down to 119) Blood pressure 80s/50s Pericarditis Mild abnormal kidney labs
I was lucky to get into Mayo Clinic just two months after my hospitalization. The combo of High RBC, Low Albumin, low blood pressure, history of episodic attacks, symptoms reported by me, similar blood data from one previous episode and a MGUS dx... the hematologist I saw felt very confident about dx of SCLS. Of note, my MGUS was diagnosed as a result of my primary care doc running every test under the sun while investing my second mystery attack in 2019.
Just saw my local hematologist today. They are contacting insurance for approval of IVIG therapy and hopefully I will begin monthly treatments soon. That was long, but being new here I thought it deserved the background. Thanks for listening. Nice to meet you all.