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Seizures/Inconclusive test
I had a break through tonic clonic and since then have had 3 more and multiple myoclonics. I have also experienced new neurological symptoms that I never had: memory recall, headaches, tremors, tingling, prickling. My wife had a positive COVID test in Dec 2020. There is no doubt I had COVID at the same time, but my test was inconclusive. As a result, no Post Covid clinic will accept me. I have had MRIs, EEGs, EKGs, all of which were normal. I know something is wrong, but have no proof. Is there a way I could definitively be diagnosed Post COVID?
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Ryan, I feel your pain. I got Covid in early 2020, before it was officially here. My initial symptoms were memory loss, then fatigue, then nerve pain, then weight loss. The long covid clinics in my area all asked "When were you diagnosed with Covid?" To which I had to say I was never "diagnosed" with covid - there were no antibody tests available when I got it. I'm pretty sure I got the original Wuhan strain, and have asked my docs - "can't you do a test to tell if I have ever had Covid ?" They say it would not distinguish between covid and a vaccine. I got rejected by all the long covid clinics in the area. Fortunately a new post covid clinic opened recently, and they accepted my cumulative list of medical records that documented my attempts to seek help for Covid-like symptoms, from my primary care physician, as well as neurologists and gastroenterologists I saw in early 2020. My first appointment with the post covid clinic was in March of 2023, primarily for issues I had at the time - memory issues and lack of appetite. Then in June I got a new symptom - my first seizure (tonic clonic) and I have now been diagnosed with Epilepsy. As a new member of this group I cannot post links, but there are articles out there about how long covid can lead to seizures.
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