I am so sorry to hear of your struggles. I'm 12 1/2 months out from when my issues started. I can't imagine going 21 months and counting!

My symptoms mirror yours in so many ways. When I got covid, I had 11 days of fever, 2 full weeks unable to eat almost anything at all. I was weak, dizzy, and shaky. I don't have anyone else who can do my job at work (I, too, work at a college). So, I worked remotely even with my fever.

A month after covid, I woke up with vertigo. I felt like I was spinning on my bed. I couldn't walk without holding onto the wall. I got into the bathtub and couldn't look at the water due to the vertigo. I had nystagmus for probably 5-10 minutes.

My vertigo continued 24/7 ... NOT episodic, but 24/7 ... for 5 months! I have been working FT the entire time, but it is almost all I can do to make it through the workday. I feel ill almost every day of my life now.

I saw my PCP 7 wks post-covid. I could barely walk due to my weakness and vertigo. She referred me to P.T. a month later. Within 3 days of starting P.T., my physical therapist and I both knew I needed to see an ENT. That took another month to get in to see, so now I was 3 mos post-covid. He saw the nystagmus in my eyes when following his finger & of course he saw how I could barely walk ... incoordination, walking at a snail's pace, holding walls, etc. He said I needed balance testing and to see a neurologist. I couldn't get in for balance testing for another 6 weeks! And my neurologist referrals took forever. Not sure who dropped the ball but when I finally started calling the 3 neurologists who I'd been referred to, some claimed they were waiting on my call and some claimed they'd never rec'd a referral. This was January (5 mos post-covid) and my referrals happened in early Dec.

I had an MRI in Dec and the radiologist believed I'd had a stroke. I had two times in Nov and Dec when my feet would not even MOVE! I was at work and started to cry because I was so scared. A coworker wheeled me to my office using my office chair. It was humiliating and so scary.

The 1st neurologist I saw (in Feb., 6 mos post-covid!) immediately checked my ferritin and said it was low. 38. She said anything below 50 can cause all sorts of neurological problems. So I started taking iron every other day. She also said I had occipital neuralgia (what I was calling daily migraines). She gave me a nerve block injection which relieved some of the pressure.

I wanted a second opinion. Saw another neurologist in March. She did a more thorough neurological exam, watching me walk up and down the hall (which, to me, went uphill). She ordered a 2nd MRI and an echocardiogram as well as a 5-day e-patch (like a 5-day EKG). My heart is normal. After she saw my 2nd MRI, she said she believed I got Wernicke's encephalopathy from my 2 wks of not eating (causing a thiamin deficiency which set off Wernicke's). She said W.E. usually causes some permanent brain damage.

Mind you, when I was working, I had trouble looking at two computer monitors. It made me dizzy. I, too, used a cane and a walker because I was so weak and dizzy. I had to use a wheelchair at the airport and I didn't even know WHY I needed a wheelchair.

I also had a head & neck CT plus SO many blood tests. One time, they took 10 vials!

I've been taking all kinds of vitamins but my Vit. B6 actually got too high, which can also make a person dizzy and weak, so I cut out my multivitamin and my B complex. But I continue to take B12 every day because my B12 was low as was my D.

I can't enter a store and walk right. Even if I'm ok at the moment, when I walk into the store, I'm suddenly uncoordinated, confused, my tremors hit hard, I can barely walk, my head hurts. It's awful. I feel the same way after watching a movie at the movie theatre (which I can no longer do) or going into an arcade where there are flashing lights.

Therefore my neurologist had me do an EEG to see if I'm having partial seizures. She also had me do a 3rd MRI to ck again for strokes. My EEG was abnormal, showing Delta and Gamma waves when I was not sleep. The report said I may be having seizures and/or epilepsy.

The 3rd MRI did not show any evidence that I ever had a stroke but reconfirmed what my neuro thought: that there had previously been edema in my vessels in my brain from W.E. The report suggested a demyelinating disease like MS. It also showed (as the others had) that I have sinus issues such as moderate mucosal thickening and also some kind of sinus cysts.

My neuro wanted to check for MS and ordered a lumbar puncture which showed high total protein, albumin, and some hemoglobin in my cerebrospinal fluid. That could be indicative of MS, but no oligoclonal bands were present which is present in at least 85% of people w/MS. My neuro doesn't think I have MS but she ordered a nerve conduction study.

The nerve conduction study in my legs was just last wk (a YEAR post-covid!) And didn't show anything abnormal. My arms/hands will be tested this wk. P.S. I got covid a 2nd time at the end of July, 50 1/2 wks after my first bout. This second round didn't do my weakness, vertigo, and incoordination (gait ataxia) any favors. I got worse again.

Next up in the testing is an at-home EEG to try to confirm or rule out partial seizures.

Also, my IgM (immunoglobulin M) was low (40) so my neuro referred me to an immunologist. I had a telemed appt w/him last wk. He thinks my sinuses are causing most of my problems. He had me start montelukast (Singulair) and zyrtec daily in addition to increasing my occasional fluticasone nasal spray to every day. He had me do an allergen blood test. He wants to see me in a month to see how I'm doing. I think he believes I'm going to be miraculously better. Gosh, I would love him to be right but at this point, I'm beginning to lose hope that I will ever have my old life back. Not even sure I can keep working FT. It is just too much and my husband is already on disability from a work injury after 33 yrs on the job. Blah.

I have met my deductible this yr and am REALLY wondering if I need to get a referral to a long haul covid clinic before the year is up so someone can maybe finally help me ... without it costing me another $6500.

I started P.T. again. I'd done 3-4 mos of P.T. the 1st time.

I've read medical studies that say i.v. methylprednisone or i.v. thiamin has helped others like me. Why can't someone try that with me? I want to be able to walk again and lift weights again, but at this point, I would settle for being able to hold up my hairdryer long enough to dry my hair without causing me so much fatigue that I almost can't even make it in to work that day.