@jgk177 hi, ive had non stop medical issues since 2020 and no doc, and ive seen just about every ologist there is and have had bone marrow biopsy to prove my hunch that 2 oncologist misdiagnosed me with blood cancer, no blood cancer and their treatment wrecked me for a long time. Then diagnosed with Hashimoto's hypothyroidism, given levothyroxine, TSH, T3, T4 all look normal, ok Wendy you're good. NO I was not and he wouldn't listen when I'd suggest, perhaps their acceptable scale isn't what my body likes? Oh the look I'd get, im just a crazy woman and my pain is all in my head or maybe youre depressed or perhaps your ADHD is the cause?? Really?? So I kept digging and digging, recently I had my first visit with a psychiatrist (my GP should NEVER have been prescribing me Adderall, then he felt I was bipolar so here take this vraylar etc. I am ADHD-C and can be off the charts if not on meds now. Late diagnosed when I was 58, explained so much of my entire life. She feels my headaches easily could be from my many traumas from childhood to 2 abusive marriages, divorces and raising my 3 kids alone, very alone since my folks moved to the UK when my first was only 1 yrs old and I was 20, it was hard but I stayed strong. She's exploring PTSD which id suggested to my GP on numerous occasions and he blew it off, so I did too.
I am getting a thorough nuero eval with MRI of my head & neck (ive had disc herniations for hears) had an EEG which triggered a lovely migraine with the flashing bright lights for what seemed like 10 mins. Ive been stuck with needles for EMGs, if you've had them the 3rd zaps was yelling oh F@#$ very loudly the entire office could hear, I was embarrassed but the doc rolled with it and even said, hear that and it was very noisy, he said those are your nerves say FU Wendy. We laughed, he's so caring and felt terrible he put my entire body into spasms and couldn't leave till they subsided.
Was in Florida for what should have been a fun and sun filled 2 weeks, instead had to stay inside with sunglasses on because my head hurt so bad, 6 day headache got worse and worse so ER and worried its GCA (giant cell Arteritis) which my Mom had and she has PMR. Off to the vascular surgeon for 2 TABs, Temporal Arterial biopsies to rule out GCA, have 3 inch long scar on the left and about 2 inch on the right. He took a lot of samples, ended up negative but in the meantime was put on 80mg prednisone by my GP for fear of losing sight in my left eye. Im 5'2 and weigh about 130/135 and found out a 200+ lb individual wouldn't even be put on that hight dose and why not combine with methotrexate and wonderful newer drug (not that new) that helps to lower the dosage of the steroid but makes it act like much higher so its safer. Well, it put me into a psychotic episode that lasted weeks, once neg for GCA they started titrating me down to get off ASAP. I ended up quiting cold turkey by 40mg because the Psychosis got so bad. Then ended up in the ER 3/4 days later with my head about to explode. ER doc agreed it was from going off so abruptly. He listened, did not send me for unnecessary scans or pokes, prods, cutting me open etc. Got a migraine cocktail via IV and pain level came down to my usual daily level of 2.

So, my journey continues and ive often wondered if my issues are exasperated by long covid and how is that even proven? I got covid very badly before they were testing for it, I was neg for the flu. I worked in a hospital in 2020 and had put in my resignation to take another job end of Feb. I got severely sick and missed several days with a high fever, my boss made me feel so bad for being out, I had to go in, with a freaking fever and they were ok with that - CRAZY! I knew enough to hide out as much as possible in my office and wore a mask when I had to walk in the halls etc. I was creating and running a Senior Program they wanted implemented. The APN I worked with said there's no doubt in her mind I had covid, the flu test was neg. Im very susceptible to pneumonia when run down, thank god my immune system was strong enough when I got it. I got 2 covid shots and no boosters and won't ever get covid related vaccines because I think they're the culprit of many of my issues.

I honestly don't know if its worth pursuing a possible long covid diagnosis or not?? I'm exhausted from all the ologists tests and starting PT for my back so insurance will approve cortisone shots even though my L5 has been GONE for about 50 years now so ive done well with exercises and keeping weight down etc to keep it at bay. Insurance companies suck with their processeses and constant denials, it's exhausting.

End of rant, thanks for listening if you did happen to read this 😉

Love this forum, its been a lifesaver for me ever since my blood cancer misdiagnoses and then flipped to Autoimmune group once Hashimotos came into play.

Be well and stay strong 💪 🤘 🙏