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03-20-2022, 05:34 PM | #1 | ||
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Hi Atticus (your real name or a Harper Lee reference?),
Thanks for replying and for your input. No need to worry: I asked for it and am very glad to hear your thoughts! So, in order... I should have added to my original post that I have actually had a follow up EMG recently, however I did not mention it because there were some real concerns about its reliability. The chap who did it was running late and did it at pace and - frankly - quite sloppily, glossing over what appeared to be consistent spontaneous activity and moving very rapidly through the test without a lot of care. He also confessed that he was looking for some very particular things, namely I believe evidence of myopathy, so wasn't best placed to detect anything else. All this explains why I am less than convinced by his claim that all was well. Although he did spend quite a lot of time testing my neuromuscular junction and nerves. I believe that CIDP was fortunately/unfortunately (?) ruled out, and there was no signs of myopathy either, nor any signs of motor neurone disease. Those results would be reassuring for me, but given my symptoms are continuing to progress (just the last few weeks I have had another slide, now demonstrating difficulties getting up from chairs), it hasn't really provided any clarity. ALS, in particular, can often be missed by EMGs... I have not been offered a lumbar puncture. However, I have had a series of blood tests, mainly to rule out things like MG and to scan for evidence of muscle breakdown, indicating myopathies. These all came back negative. Thanks again for responding to me. I will look into the lumbar puncture and raise it the next time I see a doctor. At the moment, my plan is to reschedule another GP appointment and see if I can get referred to some specialist neurology teams on the NHS relatively soon for a reevaluation. It's potentially a bit of a Pyrrhic move - if it is MND or a serious myopathy then there is little that can be done anyway - but as a matter of principle I wish to know what's going on. All best. |
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03-22-2022, 07:19 AM | #2 | ||
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Hey Will,
It's extraordinary that such sloppy practice is tolerated. When I had my first EMG the practitioner reported that I was cold so the results may not be valid. No hint of a quick follow up test to check. The neurolgist seemed comfortable. It was a beautiful summer's day too. I still think a lumbar puncture test is indicated for you, as a diagnostic tool. Best wishes, and keep us updated, Atty |
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