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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hi everyone,
I just got a copy of the letter from the mg specialist. He pretty much called the results just slightly abnormal which really (again) surprised me. Can somebody give me some guidance on this? Here are the results of my sfemg: frontalis - mean MCD 38.3 mcroSec, increased jitter in 33% of pairs obicularis oculi - increased jitter 11% of pairs. I'm only listing the abnormal findings. From what I've been able to look up, anything above 10% of pairs having increased jitter is abnormal. So, I can see why the obicularis muscle was described as "borderline abnormal" on the report, but I'm confused about the frontalis muscle. I guess I'm not clear on what would be a completely, clearly abnormal result? Could I please get some help from those of you who have had abnormal findings? What percent of pairs is clearly abnormal? Has anyone had the frontalis come back abnormal? From what I've read this muscle doesn't have standardized cutoff points for the mean MCD so I suppose it might not do me much good to compare those results. I'm just very disappointed. I showed the neuro two different videos of my calves having fasciculations and them severely cramping up. I also have a weird quivering on my thigh when I move it. They are two totally different looking things. He seems to have labelled the thigh quivering fasciculations and therefore discounted (or forgot?) the fasciculations and cramping in my calves. I am just terribly, terribly disappointed because he didn't address this at all and I thought that he would know of all people. I really thought he might talk about neuromyotonia or cramp fasciculation (which he mentioned at the time) but in the letter he just says that they didn't find any "fasciculation" evidence on the emg in my thigh. He didn't mention the calves or the cramping at all and (maybe I'm paranoid here) but seemed to imply that it was all in my head even though I have two, very shocking, videos. Well, I'm broke and I give up. My only hope is my local neuro here. I wish I hadn't spent my last bit of money going to see this guy. I feel like no matter what I do - bring pictures, videos, graphs and recordings of my oxymeter, lists of symptoms - nobody really HEARS me. This is so frustrating. Ally |
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