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Anyone think that it’s no longer long Covid? just permanent damage?
Post-COVID Recovery & COVID-19 | Last Active: Jan 21 10:12am | Replies (89)Comment receiving replies
@ericy210 I wish you the best as you work to recover. Based on my personal experience I have a question. You mention a Neurologist so obviously you've seen a Neurologist. My own personal journey in Charleston SC was coined by one of my specialists as "the journey of what its not". We have a couple of very fine medical groups here and it is surprising their lack of knowledge and treatment or LC. I doth digress . . . My LC was caused by my booster in November '21. I went to my GP in January '22 and he threw every test in the book at me, finding nothing. He sent me on to cardiology, ENT, and Neurology. Along that journey all that was found was "some level of dysautonomia" which by the way is something common in LC sufferers. Fast forward to August '23 (yes it took me that long waiting in line for specialists and special tests) and I went to Mayo Rochester. I have been executing their plan beginning September '23 and I fell better, not 100% back, but better. Best case I do get to 100%, worst case I have learned how to manage my condition and feel better most of the time. Highly recommend you go to Mayo or any of the other hospitals that offer well researched LC recovery programs.
Replies to "@ericy210 I wish you the best as you work to recover. Based on my personal experience..."
Ericy220
Your recovery after several years is wonderful
I agree Mayo is the best. When I went both the clinician and I felt I was headed for recovery so we didn’t need a plan. Unfortunately I was not in recovery and it was a temporary lull. You credit less symptoms to your plan, can you tell us what your steps were to get there and thanks for the encouragement
Hello. The neurologist first put me on a dementia medication to try slow the destruction of synapse connections in the brain. I did a couple of MRIs and no structural defects were found. I did a 300 question test for psych analysis and it showed I as depressed. I did an eight hour session where I’m matching colors, repeating sentences, and other IQ-type claims. I spent a week in the hospital with 28 electrodes on my scalp and a camera on me at all times - the tried sleep deprivation, flashing lights, and more to see if they could induce a seizure. I had classic blood markers off that are consistent with long Covid. The cognitive ability stuff can be misleading since it measures you versus the average. I’ve done it before and qualified for Mensa and am very successful. The test comes back with me at average or slightly average, but I know I could have done better.
I as told to get expensive software for home to retrain my brain and measure progress. Now that I’m feeling better, I can blow the roof off those tests. I may crash in a couple of weeks. That’s why I bought an Apple Watch when this started. I can call for help and it could walk me to my car, which I’ve lost in the past. Some days are really good, some are a struggle, but I’m seeing some light ahead after a long journey and nothings going to stop me.
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@ericy210 How do you find a long covid clinic?