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@franklinlala God Bless your Mom, I can imagine you miss her. We have that long life in our family too and I thank God for the gift of my mom. She's my biggest supporter but you're right, worrying isn't good for them. Yes, the brain doctor was a neuro surgeon, something like that. 😂 I was really in the best hospital had so many doctors standing over me multiple times during the day. My kids were amazed about the care I got, having never been in the hospital other than to have babies I was impressed too, and relieved. The problem I run into is the lack of knowledge on GCA. I was shocked when I saw a vascular doctor who told me GCA isn't systemic. Are you serious I said, a simple Google search will tell you it absolutely is. My Rheumatologist knows it and so does my opthamologist. A vascular doctor not knowing that is disturbing. I have something going on with my feet that could be from the GCA or the Prednisone. It's not the large veins or arteries, could be small fiber. Haven't followed up with that neurologist yet. Probably won't, he tried to tell me we don't have nerves along our rib cage. How they get their degrees is a mystery to me. I do have terrible burning in the rib cage area. We really have to advocate for ourselves with these diseases. I've spent countless hours reading about it and have communicated with people in other countries through forums to find out if treatment is any different. It's basically the same but tapers vary, some way too fast. So many are blind from a delay in diagnosis. What I found interesting was reading about the huge spike in GCA during covid, unbelievable, massive. I do understand virus's can trigger autoimmune diseases but the spike was huge. I had a mild case and am not vaxxed, never had a flu shot and had the flu once, over 30 years ago. I do not understand my immune system attacking me like it is, I just don't. To answer your question on pain and stiffness I would have to say yes but it's tolerable, probably because of the Prednisone. I may have PMR but haven't discussed it with any doctor. My recent blood work is overall stable except high on the white blood cells and absolute neutrophils as always. Not nearly as high as they were. I believe we have angels watching over us, someone was there in the quiet of that room in the hospital with a view overlooking Lake Erie and the helicopter pad of the childrens hospital next door and I'll never forget it. Be blessed and tell your friend I'm praying for her and for you too. 🙏

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Replies to "@franklinlala God Bless your Mom, I can imagine you miss her. We have that long life..."

@kobellava Where to begin? You have had a wealth of experiences both good and bad. I am floored by some of the feedback from the doctors. I hope you don’t give up on them. For every questionable doctor, there are equally skilled and dedicated ones too. Our challenge is finding them. No one likes going to the doctor, except my mom, she treated it like a social visit. My point being if you are having pain in your feet, that is your body speaking to you and it worth having it looked at. Even your ribs. I have read about something called intercostal neuralgia caused by inflammation. Ask the doctor who said there are no nerves running along your ribs about that!

I was having lunch with a retired doctor friend yesterday. We were discussing the very topic of PMR, vaccinations, and Covid and if there was any relationship between it all. The information he had available to him showed there was a bigger correlation of PMR for patients that had contracted the Covid virus than those who had only received the vaccinations. Many studies were conducted in Japan. Where GCA falls into all of this is another question. I wonder if there just isn’t enough data and studies yet to significantly prove one theory over another.
For us it doesn’t matter now, but for those behind us it sure would be nice to have solid answers.
I love how you said your mom is your biggest supporter. I would tell everyone my mom was my biggest cheer leader. We all need those kind of people in our lives that build us up. And your story about the presence in your hospital room gave me chills. I’m sure you are right! Thanks for sharing, as well as your blessings. Many back to you as well.