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Fiance has SCLS after Covid shot and no Dr will help!

kage101 Message
4 Mar 2022, 12:49 AM

After getting the J&J shot through work she became sick, almost passed out, and within hours started to swell up with pitting edema in her legs. She's so damn stubborn I couldn't get her to go to the hospital until a week later and she had gained probably close to 20lbs by then. The ER doctor literally blew her off, didn't believe the shot caused it, and told her to follow up with her regular Dr (which she didn't have one). 

Her insurance doesn't cover everything so we pay for every visit. I couldn't get her to go to another Dr until weeks later and he told her she had SCLS from the shot, but has no idea what to do. By this time she's gained 50lbs, looks 9 months pregnant, and is miserable 24/7. They ran tests to make sure it wasn't heart disease, but only found that she now has a heart murmur she didn't have before. This Dr has no idea what to do and is supposedly getting a group of Drs to look into it, but it's been 2 months and still he hasn't done anything for her. 

She's been getting sicker and vomiting the last couple days, plus she said it's getting harder for to breathe at times (all this weight is pressing on her organs). I'm trying to get her to go to another hospital in Columbus (we're in Lancaster,Oh). I'm seriously worried she's gonna die because it's so hard to get her to see anyone else now. 

Does anyone know of anywhere in Ohio I should take her?

aporzeca Message
4 Mar 2022, 05:31 AM

kage101,

I'm so sorry to hear about your fiancée's medical problem!  While I'm not a physician, I've learned a great deal about SCLS during the past more than fifteen years, through this community and from personal experience, and in my opinion she does not suffer from SCLS.  

SCLS is an exceedingly rare episodic illness characterized by acute and severe attacks featuring a rapid fall in blood pressure due to the temporary leak of plasma out of the blood circulatory system.  Patients gain weight during an episode IF they are given replacement intravenous fluids, and then only during a few days.  Once the leak episode ends, and if they survive it, their body gets rid of all excess fluids, and thus their weight returns to normal.

In other words, SCLS features a self-reversing phenomenon.  Therefore, what you are describing, somebody gaining weight week after week, and month after month, is indicative of some other, chronic -- as opppsed to episodic -- swelling disorder.

If you can afford it, or can work out a deal with the hospital in advance, I suggest you make an appointment for her to be seen at the world-famous Cleveland Clinic.  People of means or with good insurance flock there from all over the country and even from abroad with all kinds of undiagnosed or unresolved health problems.

Failing that, your next-best bet (and closest option) is for her to be seen by an edema specialist at the Ohio State University Wexner Medical Center in Columbus, which is ranked #2 in Ohio.  This includes internists (big-picture clinicians), nephrologists (kidney specialists), and gastroenterologists (digestive tract or liver specialists), as well as bariatric (weight control) physicians.  Check out https://wexnermedical.osu.edu/find-a-doctor or else https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/doctors/internists

Good luck and keep us posted!

kage101 Message
5 Apr 2022, 02:46 AM

Thank you!