I have but all the 100s of doctors I've seen definitely don't understand this one. I honestly wouldn't have survived without God and the CDC. They took over my care. They had to make an antibiotic from me. Not sure how they did it but I wasn't responding to any antibiotics. I died and came back. Survived but still had months of recovery and surgeries. I see the scared looks on the Dr's faces now when I tell them. They have no clue how to determine what damage was done. I feel like I've been sick and hiding it the majority of my life. Fear people won't believe me. Fear to admit it to myself. Fear I'm crazy. Fear people won't need me. I'm a mother and grandmother first and foremost. I hope my family understands how much I love them. They have tirelessly taken care of me for years. As have I them. They have no clue the pain I'm in. And I'm glad. No I shouldn't have to hide it and one day like before it won't let me anymore. And I'll have to see that look if despair on my children's faces. I'd rather hide what I can. I'm going off on a rant. I'm such a woman. Lol. Thanks for listening my friend.🌸🌻

@A MySpondylitisTeam Member. Hey girl, i just re-read your story on your wall. I have everything you have mentioned except the TIA and a couple of those meds you mentioned. I have been taking zoloft for anxiety and depression since 1997 and trazodone for sleep since 2002 so i have serotonin syndrome with diffuse spotting throughout my brain with cluster migraines. Subtle differences. It sounds to me though that your primary disease is like Psoriatic Spondylitis, not the same as AS and not as common as other forms of Psoriatic arthritis. That's what i have and, less common, both sides of body and axial (spine) as well as peripheral (arms and legs). Everything else you mention are symptoms/comorbidities as part of the overall disease. It comes with a very long laundry list of full time job like management and research to find out for yourself whats going on, why, and how best to manage it to keep it from getting much worse, because it most definitely can, and how to manage some semblance of a quality life when you can. There are indeed many bad days, but that doesn't mean there can't be many good days too. Read my posts under the updates tab on my wall to find out how. Reach out anytime for elaboration if anything peaks your interest. Kindest regards 🙏😌

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@A MySpondylitisTeam Member. I had/have the high CH50 and low IgG, still investigating through my Nephrologist/Osteopath. I seem to recall that being related to ongoing chronic inflammation when i looked it up earlier this year. Ruled out breast cancer through biopsy earlier this year. Dont know about the mouth pain, do you eat much citrus or have a high oxalate diet? Maybe something to that. Where do you get the pinpoint dots that come and go? Do you have psoriasis diagnosed? Some types present that way. Respectfully 🙏😌

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@A MySpondylitisTeam Member. Oh wow Rhonda. I am so so sorry. Your pain and disease is very real. It us definitely not all in your head and it is definitely well documented. I have a busy day today, but during breaks or tomorrow for sure I will forward to you what I have been reading on your condition the past few days. It just so happens that I started on the topic searching for my own answers and clues to recovery. Wow. I didn't have nf though and am not sure which strain of strep set off my Psoriatic disease. But I definitely read about StrepAnf. The problem with all medical practice these days is that now that universal health care availability dies exist, is a matter of basic economics. Demand far outstrips supply. Drs simply cannot keep up with any of the continuing education and extra publications after they graduate from med school not just because of the quantity of patients outnumbering the supply of drs, but because of the crazy level if extra work aside from treating patients placed on them by insurance companies' documentation demands. You, I and everyone else sick and exhausted from disease have to take on the job of educating them by sharing documents they simply haven't had a chance to read. And, unfortunately, for many human reasons not all of them are receptive to that. It's a fine art to educate a primadonna. I did exactly that with my spine surgeon who did my stem cell transplant in April. I printed the evidence that the type of procedure I had is actually approved by the FDA and covered by insurance. He was receptive and appreciative, but not all are. I'll be back in touch with those referenced attachments for you real soon. If I were in your position I would get all info I can, print it out, highlight key info, and give to my drs. More importantly, I would seek out programs that target StrepAnf with CRISPR, phase, and antibiotic treatments. There are a few. I'll forward that to you too. Lastly, "woman vent" to me all you want. Your condition is very real.😌😔🙏

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Pretty kitty btw