Diagnosed with LC a few weeks ago after 6(!) years of either being misdiagnosed or being told it’s psychological
I feel vindicated but also slightly pissed off. Although my personal long covid journey may not be typical.
I got COVID in March of 2020. I had a few days of the worst fever I’ve ever had and a week of brain fog and fatigue but things slowly got better. Then a few months later I started having weird neurological symptoms… vestibular disequilibrium, pins and needles in my legs. Got all sorts of tests done. They said I Mal De Debarquement and had me go through vestibular rehab. Got a biopsy done for small fiber neuropathy that came back positive. Doctors said these weren’t related…
Then the episodes of fatigue, brain fog, and headaches started. This was end of 2020/ early 2021. Saw a neurologist and asked if this may be related to Covid, said no, that I just had a few different conditions… migraines and neuropathy. I didn’t understand how these could all start around the same time… I also developed allergies to things I wasn’t ever allergic to before like medical adhesives.
Got MRIs to make sure I didn’t have MS (that was a scary time). The migraine meds were only moderately effective.
In 2023 I had another flu that I suspect NOW was COVID again, and a month later my “migraine” flare ups started to become more severe and more frequent… bad enough that I was in a flare up 20 out of 30 days. My neuro just threw more meds at me and suggested I may have some functional neurological issue, fibromyalgia,or psychiatric issues which made me furious.
Nothing worked well and last year I was forced to stop working. The flare ups were so bad I just couldn’t do anything. I would get flu like symptoms, fatigue, brain fog, full body pins and needles, headaches, dizziness, muscle pain.
Finally, this year as nothing seemed to be working I demanded that my neuro refer me to a long covid clinic, and the LC doc at the clinic took my history and timeline and was the first provider to give me the specific disease pathways that were causing ALL OF MY SYMPTOMS.
Unfortunately, no quick fix, but was given diet mods, probiotics and a few other lifestyle changes to stick with for 6 months … after which we may try LDN, or other therapies.
I have to say, it’s going to be hard to be patient…
I’ve decided to experiment with nicotine patches just to get some energy back and cut through the brain fog because I really really want to return to my career but to do that I need to keep my skills sharp and get brainpower back.
* edit: grammar