So I’ve been in this forum since last year. Had some seasoned (long term) members of this group disputing my concerns about my health and symptoms with doubting pedantic comments over the time. Unfortunately, I’m not the only one who has received this sort of doubt and backlash from certain members of this community.
I am under an amazing consultant now actually who listened to me after over a year of gaslighting from the so called “professionals” and told me MND was, unfortunately, on the table. Had EMG a few days ago (last one was in March).
More abnormalities in my face including positive sharp waves, polyphasic potentials and instability. Tongue also abnormal and atrophied.
I now have widespread polyphasia in my paraspinals, right arm and trapezius as well as face and tongue, reduced recruitment in places and positive sharp waves in my right arm and right calf as well as face. Clinical weakness on the right hand side of my face and reduced gag reflex. Another spinal tap soon and then my investigations are finished. They’ve ruled almost everything else out.
The most hurtful thing (apart from the gaslighting destroying my family as they trusted some of the so called professionals) is that I came on here originally with concerns about my symptoms only to be gaslighted by other members too. It’s supposed to be a support group. All of the above has made me severely depressed. It’s amazing what a little bit of support can do for someone, especially when they need it. Kindness and understanding is free. It costs nothing.
Love and prayers to the genuine and kind people on this group. As for the minority, if you don’t have any compassion or anything constructive to say then kindly jog on from the posts and don’t say anything that isn’t helpful. You have no idea what it can do to someone after feeling so alone and unsupported for so long.
I am under an amazing consultant now actually who listened to me after over a year of gaslighting from the so called “professionals” and told me MND was, unfortunately, on the table. Had EMG a few days ago (last one was in March).
More abnormalities in my face including positive sharp waves, polyphasic potentials and instability. Tongue also abnormal and atrophied.
I now have widespread polyphasia in my paraspinals, right arm and trapezius as well as face and tongue, reduced recruitment in places and positive sharp waves in my right arm and right calf as well as face. Clinical weakness on the right hand side of my face and reduced gag reflex. Another spinal tap soon and then my investigations are finished. They’ve ruled almost everything else out.
The most hurtful thing (apart from the gaslighting destroying my family as they trusted some of the so called professionals) is that I came on here originally with concerns about my symptoms only to be gaslighted by other members too. It’s supposed to be a support group. All of the above has made me severely depressed. It’s amazing what a little bit of support can do for someone, especially when they need it. Kindness and understanding is free. It costs nothing.
Love and prayers to the genuine and kind people on this group. As for the minority, if you don’t have any compassion or anything constructive to say then kindly jog on from the posts and don’t say anything that isn’t helpful. You have no idea what it can do to someone after feeling so alone and unsupported for so long.
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