Autoimmune? Post-COVID?

Posted by kaitgmiller @kaitgmiller, Aug 5, 2021

I had COVID last October. Thought I was better, and then a month later, I started having pain all over. I had swelling in my hands, neck, and head; pain shooting down my left arm; throbbing & warmth in my spine. I still have pain all over – concentrated in my spine, intense pressure/popping in my ears and nose, and swelling in my neck. I also get weird sensations in my head that seems to correlate with my ear and nose pressure. The muscle pain is full-blown too and I wake up with numb arms/legs. I can’t sleep even with ambien or lunesta or melatonin. I was tested for everything under the sun – brain mri, spine mri, neck ct, Lyme, viruses, ebv, etc. My ana went + for speckled and homogenous a few months after COVID – and it’s always been negative. I didn’t test + for a specific disease. My neurologist told me he had no clue and to go to Mayo. I’ve been waiting to do that as a last resort. I’ve been in a clinical trial, seen a CFS specialist (who said he wasn’t sure what was going on with me – but I didn’t meet criteria for CFS or Fibro & those things don’t come on suddenly), and countless other doctors. I also don’t fit the post-covid picture and have already worked with a post covid clinic who has no clue what’s happening. I’ve seen endocrinology, who said the swelling in my neck was my cartilage and not my thyroid. My lactic acid levels are high and it feels like oxygen isn’t getting to my legs or brain. Oh and it feels like I have a tight band around my chest. My ears feel like they are bleeding even though they aren’t? They feel swollen shut. If I get too hot or out of breath, my heart palpitates, head throbs, neck swells, and I experience neurological symptoms. There seems to be some autoimmune process happening. I’ve tried steroids, colchicine, etc. No benefits. We’ve been looking for answers for months and have been gaslit by so many doctors. I’m worried to see any one else, but I also can’t afford to stay in this condition. I’m a 28 yo previously healthy person. Any guidance?

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Hello @kaitgmiller and welcome to Mayo Clinic Connect. You have certainly been through an immense amount of health issues. Considering you were otherwise healthy and are just 28, I think I would suggest expediting your request to come to Mayo Clinic like you have already considered. The reason being is because of the coordinated care. Keeping tabs on what multiple departments are doing to support you is overwhelming and stressful on its own.

Are you in MN?

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@amandajro

Hello @kaitgmiller and welcome to Mayo Clinic Connect. You have certainly been through an immense amount of health issues. Considering you were otherwise healthy and are just 28, I think I would suggest expediting your request to come to Mayo Clinic like you have already considered. The reason being is because of the coordinated care. Keeping tabs on what multiple departments are doing to support you is overwhelming and stressful on its own.

Are you in MN?

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Hi! I’m not, I’m in TX, but the drive isn’t too bad

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@kaitgmiller

Hi! I’m not, I’m in TX, but the drive isn’t too bad

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Hi Kait,
Here is the link to the Appointment Request office at all Mayo Clinic locations http://mayocl.in/1mtmR63

You can self refer or get your doctor to submit a referral. I sure you get answers soon.

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