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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (58)Comment receiving replies
@caroljeand They were mainly non-classic symptoms of PMR not GCA Vasculitis. The only non-classic symptom of GCA was I had absolutely no cranial problems. No headaches, no eye involvement, no tender or sensitive scalp - nothing. Very rare but it does happen. My GCA symptoms were mainly tossed in the PMR bucket or not a Rheumy problem. My onset was caused by an adverse reaction to a drug so several symptoms were dismissed by several doctors. I've had neuropathy since 2019 that no doctor ever took an interest in as soon as they determined I was not diabetic or pre-diabetic. Trust me I live in Dallas Texas and we have two major medical schools within 10 miles of each other. I have a board choice of well-educated highly skilled doctors. Specialists are so single focused that it is often hard to get them to take their blinders off.
Replies to "@caroljeand They were mainly non-classic symptoms of PMR not GCA Vasculitis. The only non-classic symptom of..."
@jabrown0407
I just wonder if we all should be tested for GCA even though we don’t have the classic symptoms. This may sound strange but when the shower spray hits my lower arms it is painful. I dismiss it as to the fact I have no fat protecting my veins from the impact, but just wonder if it’s something else….And my veins on my hands protrude.
@jabrown0407
Have you had any surgery in the locale of the neuropathy?
I had hammertoe toe surgery and when the bandages came off I had terrible tingling in an adjacent area. I’ve had the EMG and have been told I do not have neuropathy and that podiatrist told me it was coming from my back. I never believed him.
I know his surgery did something to a nearby nerve to cause the sensation of tingling and numbness.
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@jabrown0407
My neuropathy was "evaluated" by a neurologist and was dismissed the same way. An EMG and nerve conduction study was done which confirmed "diffuse neuropathy." I never complained about my arms being numb but the nerve conduction study confirmed neuropathy was present in my arms as well.
I asked what was causing the neuropathy. As I recall ... the answer was, "We don't know so it is idiopathic since I wasn't diabetic." I remember thinking if they didn't know what caused the neuropathy then they probably didn't how to stop the neuropathy.
Since getting off Prednisone, I swear the neuropathy is improving but I'm not completely sure. I mentioned doing another nerve conduction study to my primary care doctor to see if it was improving. The answer I received was, "As long as it is getting better there isn't any need to do another nerve conduction study." I guess I will never know why I have idiopathic polyneuropathy.
https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/peripheral-nerve/idiopathic-polyneuropathy
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I even have foot drop from polyneuropathy that they say won't get any better at this stage. As a patient with foot drop they gave me an orthotic brace to wear to hold my foot up when I walk.