Hi everyone, I posted a little while ago asking what to expect as I head down this possible diagnosis path and thought I'd check in.
I had a second opinion at the MS Clinic by a renowned doc who referred me to a young, excellent doctor in the same hospital who specializes in peripheral neuropathies and motor neuron disease.
I have a EMG/NCV this Monday. He again mentioned the possibility of something like PLS, or MMN or similar. I had the test for ganglioside antibodies and this came back positive for three of them...with 0-50 IV being normal, I tested at 96 for GMI (positive), 99 for GD1A (one point from being a 'strong positive') and 107 for GD1B (considered a strong positive). Have any of you had similar blood test results?
From my research, having these antibodies can support something like multifocal motor neuropathy or even forms of GBS, but I haven't had a chance to speak with my doctor about them yet. I was initially excited to see these results as many of the associated diseases can be somewhat treatable (and even reverse some weakness) with IVIG and such
My only anxiety about Monday is, weirdly enough, having another EMG/NCV normal enough to keep me longer in the diagnosis purgatory, or perhaps even a diagnosis of relatively untreatable PLS. Either way, I am just slowly getting worse and the lack of answers is beginning to really eat at my mental health.
I had a neurological physical therapy eval yesterday at this hospital and now have extensive weakness as noted by the therapist, as well as new recommendation to use a cane. ): Regardless, I just wish I could play my instrument again!! Definitely hoping for some sort of resolution this coming week.
I had a second opinion at the MS Clinic by a renowned doc who referred me to a young, excellent doctor in the same hospital who specializes in peripheral neuropathies and motor neuron disease.
I have a EMG/NCV this Monday. He again mentioned the possibility of something like PLS, or MMN or similar. I had the test for ganglioside antibodies and this came back positive for three of them...with 0-50 IV being normal, I tested at 96 for GMI (positive), 99 for GD1A (one point from being a 'strong positive') and 107 for GD1B (considered a strong positive). Have any of you had similar blood test results?
From my research, having these antibodies can support something like multifocal motor neuropathy or even forms of GBS, but I haven't had a chance to speak with my doctor about them yet. I was initially excited to see these results as many of the associated diseases can be somewhat treatable (and even reverse some weakness) with IVIG and such
My only anxiety about Monday is, weirdly enough, having another EMG/NCV normal enough to keep me longer in the diagnosis purgatory, or perhaps even a diagnosis of relatively untreatable PLS. Either way, I am just slowly getting worse and the lack of answers is beginning to really eat at my mental health.I had a neurological physical therapy eval yesterday at this hospital and now have extensive weakness as noted by the therapist, as well as new recommendation to use a cane. ): Regardless, I just wish I could play my instrument again!! Definitely hoping for some sort of resolution this coming week.
