Non Specific Myopathy
I will summarize as quickly as possible. in 2018 I started with severe muscle type pain above and below my right knee. Muscles sore to touch and I could hardly walk. I was a normal, full time working RN prior to this with no major health issues other than HTN. I saw my primary October 15 2018. We thought it was statin induced. Steroids and rest. It worsened to severe pain in both legs, unable to stand or walk except very short periods. Severe weakness and pain to upper and lower legs. Saw rheumatologist in Springfield Illinois, Nov 2018. They passed me to Neuro there. Had blood tests and and EMG. Neuro said rheum and passed me back. Muscle biopsy also done.
Long story short, my doctor pursued another opinion at Washington University in St Louis, neuromuscular. Repeat EMG. MRI, which I was told showed fascia inflammation. Skin biopsy done. Didn’t show anything, as I figured it wouldn’t but have to jump through the hoops of hell. Initial EMG in Springfield MD said it appeared to be a myositis. I have muscle biopsy results from Springfield,
In St Louis they could not figure out a cause. Passed me to rheumatology. They recommended a fascia biopsy or referral to Mayo. Saw Mayo neuro November 4. Emg repeat positive for muscle issue. Repeat muscle biopsy. All they can come up with is myopathy. My primary has started me back on steroids, which were not the most effective to begin with. Immunosuppressive oral option if steroids don’t work well. We already know they don’t, as I have been on them quite a bit over the past 17 months. The side effects get so severe I have to stop.
Needless to say, I can no linger work. With steroids I am able to get up and ambulate a little, prior to steroids I could barely get up and had to use walker, but very poorly. I have seen so many physicians and really thought Mayo would get me an answer. I’m tired of going specialist to specialist and have to be honest…our insurance does not cover well and I owe over $14,000 out of my own pocket, not counting bills I have already paid. My primary offered me another autoimmune specialty but if Mayo can’t figure it out, I just don’t have the energy to start over again. I absolutely will NOT have another EMG nor muscle biopsy ever. Yes, I stand firm on those. 3 EMG’s and 3 muscle biopsy sites are more than anyone should have to endure.
I have sent an email to see why a Rheumatology specialty area Mayo can’t review my case as well. I deserve answers and have done every horrible thing requested of me. Thinking of sending a message to my “Mayo medical team” but that tend to just be, basically, ignored.
Opinions because I am literally at my wits end.