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I have all of this as well.Basically my whole body stopped working.I don't even have the ability to throw up anymore.Covid attacks the vagus nerve too which controls so much.The problem is I never tested positive for long covid.I never tested for covid at the beginning because I thought my symptoms were brought on by an iron infusion,but I believe I got covid at the same time.I just never got better.The symptoms I have are nothing the specialists I have seen have dealt with before.Do you know of any long covid clinics that will take you just by symptoms?The clinics in my area will only accept you if you test positive for long covid.
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Hello J, similar experience here. Got Covid before there were antibody tests so could not “prove” I’d had Covid, and the local Long Covid clinic would not admit me without a positive antibody test. After years of mysterious symptoms (memory issues, amnesia, fatigue, nerve pain, lack of appetite, 50 pound weight loss, change in smell) my doctors were stumped. Brain MRIs came back normal. I thought I was dying and begged my doctor to see if he could get me admitted to the LC clinic. He was able to get me admitted. About 3 months into the LC clinic, I had a seizure and was diagnosed with Epilepsy. Covid messes with the hypothalamus and the vagus nerve as you mentioned, and can cause seizures. I recently had a sleep study done which confirmed focal seizures and epilepsy. There seems to be a disconnect between primary care physicians and doctors that work in hospitals. My physician and my neurologist seem unaware of the Covid-seizure connection, but the sleep study MD confirmed hospitals have been seeing Covid-related seizures, going back to late 2019, before the first “official” case in early 2020. Early studies suggest 1 in 100 people who get Covid may develop seizures within 6 months of infection. Seizures can cause nausea and may explain some of your symptoms.
Hello,
I don't have a positive COVID test. I had it before there were tests. I had it in December 2019 into early January. It went around my department. I work at a University. I go to Johns Hopkins. I had to be referred there by another physician. The first appointment I had was telemed where they asked me a bunch of questions then asked what the top 3 issues I wanted help with. As I have POTS causing extreme dizziness and blacking out, this was the top priority. I have extreme pain which was number 2 and then the eating/GI issues. Johns Hopkins wanted people who had a positive test but I could not produce one based on the timing of my having it. I have not had it since. I live about 2 hours away from Johns Hopkins so it is not convenient but can be a day trip. Good luck!
May I ask what the test tests for in Long Covid? I lost my taste and smell in December of 2022. Does this mean I am positive for Long Covid?
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A test for long covid doesn’t exist.