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PMR - What do you wish you had known . . .
Polymyalgia Rheumatica (PMR) | Last Active: 6 hours ago | Replies (139)Comment receiving replies
@pmrsuzie I have had an echocardiogram annually since 2019 when all this started. To this day no aortic problems show up, so please do not assume it is the gold standard to see an aortic issue. Mine was first seen in a PET scan that was used to Dx the GCA and later confirmed and detailed in a thoracic MRI with and without contrast. I have also had an MRI without contrast of the head and neck where additional vascular damage was identified. I certainly don't mean to alarm you however I never imagined that I could have GCA without a single cranial symptom. Actually, my local Rheumy struggled with the Dx initially. Had I not travelled to a major medical center I do not believe this would have been identified to this day. The interesting twist in all this is that my local Rheumy works for a well-known major teaching hospital in my community that does consulting just like the center I travelled to.
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@jabrown0407
I was told that I had a "tortuous aorta" but I don't experience any symptoms. It only bothers me that I have a tortuous aorta. They shouldn't have told me that I have one because there isn't anything I can do for it.
https://my.clevelandclinic.org/health/diseases/tortuous-aorta
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I get an annual CT-scan of my abdomen to monitor things that also are not causing me to have any symptoms. They can see other things that are abnormal but I don't have any symptoms. I have decided that I am normally abnormal.
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Now I take an expensive medication to treat PMR except I no longer feel like I still have PMR. My doctors always ask me if I have any symptoms of GCA and that really bugs me. I tell them I probably won't know if I have GCA unless they tell me that I do. My face and head are mostly numb so I don't feel much of anything that is normal. I only have abnormal facial sensations. I also have visual disturbances but that has been explained too . At least I know why my head and face are abnormal and why I have visual disturbances so that settles that.