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Neuropathy or CIPD???

Neuropathy | Last Active: Sep 13 8:53am | Replies (24)

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Hello again, you have really been through so much. Funny, with the EMG tests, the last one they did I think it was on 8/14, they did not do my arms. I don’t think. I can’t remember if they did them in 2023. That is strange. I have had Spinal Tap before, (seizures). I am thinking after I get the results and depending what they say I am thinking of maybe contacting University of PA for an opinion. I have what they call ‘late effects’, many ailments from all the Total Body Radiation and Chemotherapy I had in 1981 to treat my AML Leukemia. Long list. I think this should have been addressed in 2023 when the EMG came back abnormal then. I also just had Left Carotid Artery Surgery 8 weeks ago tomorrow. It went from 50% blockage to over 75% I 8 weeks. I have never been so terrified of a surgery in my life. I know too well you have to be your own advocate. Thank you. 🙏🏻😇

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Replies to "Hello again, you have really been through so much. Funny, with the EMG tests, the last..."

Hello @jedge54 How are you doing? Did you start Riliprubart? I saw an ad on TV the other night for a self injection drug for those with CIPD. I didn’t get the name. One of my sisters and her husband also saw the ad on TV. To update you, my Spinal Tap is finally scheduled for next Thursday 6:30 to be at Hospital. Procedure is at 8:00am. I think I mentioned to you that I will wait and see what the results are and if positive I think I might go to where you go University of PA.
Sending healing thoughts and prayers your way. 🙏🏻🙏🏻🙏🏻