In the past two years I’ve had a lot of tests done. Mris, pet scans, ct scans, neuro tests, spinal tap, biopsies and countless blood work. Today I had what I would consider the worst tests of all tests. An emg (no idea what it stands for). So I’ve had what I am assuming is neuropathy in my legs and feet. A decrease in sensation. When they tested my reflexes last week I was waiting for them to put the medal piece on my toe. Turns out it was already pressed up against it and I couldn’t feel it.
Anyways back to the emg…Here’s the deal you lay down on a bed, thankfully I had a blanket covering my because it was cold. The first part of the test “wasn’t going to be too bad”-they stick somethjng onto your legs and then essentially zap you. Some zaps hurt more than others but I was told that the zaps would be the worst of it. Perfect. I can handle the next part…so I thought. Then the neurologist comes in and explains the next part. They are going to take a needle and listen to my muscles. I’ll have to flex when the needle is in there. someone lied when they said the zapping was the worst part. Nope not at all. The needle and flexing was the worst part.
I have the results back-but there a re a lot of big words that I don’t understand. So I’ll wait until I hear from the neurologist before I start to panic.
essentially this test is going to confirm or deny their suspicions I have lesions on my nerve ending. I’ve accepted that this is most likely the case. Ive decided (after much discussion) that I am going to continue on the increased tagrisso and see how I do. I‘ve had some relief in symptoms since I increased my tagrisso. And things don’t seem to be getting worse. So as long as it can stabilize things this is the treatment I am going with.
Tuesday I have a second opinion with an EGFR guru. I am confident in my team and that she is going to agree so for now I won’t think about my legs/feet having decreased sensations. For now I am thankful the increased tagrisso took care of my hip and back pain.
Tomorrow I go for another scan-fingers crossed everything is stable.
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