Good Morning,

My name is Eddie and I've been a member going back quite some time. I haven't been very active because I've been in an odd place of limbo for many years. I was diagnosed by a local neuro back in 2007 with MG after having bulbar symptoms and testing positive for the binding antibodies. MS was ruled out. My symptoms were mild and I didn't have the Hallmark vision issues so the Mayo in Florida wasnt convinced I had it. I continued to have positive antibodies until 2014 and they disappeared. I started having odd vision issues and I was getting flares where my legs and arms would get very heavy. My feet and hands also causes me problems feeling weak. I had a muscle biopsy done that was pretty normal with Cleveland clinic last year and had an emg and alleged SFEMG by Mayo clinic the year prior that was negative. My leg, arm, and now intermittent neck fatigue has progressed. I started acceptimg the fact that whatever I have wouldn't be treatable because nothing could be found. Im certainly at my worst right now than ever and I have a couple of days maybe of exertion and then I crash. Some days are better than others, but I tend to have more bad weeks and maybe a couple of a good days peppered in. What brings me to this forum is I don't think the SFEMG was done properly. I'm having more issues closer to the core of my body (quads, neck, biceps) and I know the only place the emg was performed was on my foot and hand. I remember repetitive emg being done but I do not recall a needle being tried in different muscles which I thought was supposed to happen with a SFEMG. My local neuro retired so I'm in limbo but I have a new internal medicine doctor that asked me to do some squats and try to push my arms in and out and he observed how rapidly the muscles fatigued on me. He said the SFEMG wouldn't be accurate if the right muscles weren't tested. He ordered repeat blood work and ironically my antibodies are back and almost triple what the baseline of positive is. That's the highest it's ever been. Mayo is dismissive of this and said people can have antibodies and not have MG. I understand that the SFEMG is considered the gold standard however, I'm just absolutely shocked about my situation. I'm currently not on any treatment and waiting on my follow up. Cleveland clinic has offered to call in Mestinon and line me up for a SFEMG in Miami. I just can't believe how much fighting I'm having to go through with this. I don't think it's coincidental I had and now have antibodies for MG. Perhaps someone here could share a similar experience? I'm coming up on 2 years where I had to stop going to the gym. I'm very depressed because my legs won't keep up with what I want to do. I just eed to connect with some other folks right now and try to keep positive. I've been down this rabbit hole before and I know this is a great starting point. Thank you for letting me share/rant.