I developed a anti-GQ1b positive autoimmune neuropathy after vaccinations and a viral illness. This lead to widespread dysfunction. I have tested positive for ANA as well. I have been diagnosed with POTS, autoimmune autonomic neuropathy, small fiber neuropathy. It has been 6 months since onset. Prednisone was effective in alleviating burning and muscle pains, but that was only a 2.5 week taper, and was not continued.
Currently I have continued visual issues (diplopia, palinopsia, "visual snow"), oxygen desaturation events at night (previously occurred during day as well), burning sensations, sleep disturbances, continued hearing sensitivity, POTS symptoms, palpitations, and a progressing muscular issue (pain, fasciculations, weakness/feeling of continuous cramping) that started in my glutes and calves early in the course of disease, and is actively spreading to involve my arms.
In my research I have realized that there may be an element of autoimmune encephalopathy involved. Clues suggesting this are the hearing, vision, breathing, and sleep disturbances. Evoked potential tests of hearing and vision are normal, pointing to brain issue.
I would like to receive treatment for this, as I have read of successful treatment with IVIg or other forms of immunosuppression. My doctor tells me that my anti-GQ1b antibody is too low to warrant treatment (it is 1:100 now, it was negative 2 months ago and 1:1600 4 months ago). I have tested negative for many other antibodies related to these processes, but I am unsure whether I have had the full work-up in that regard. I have not seen a neuroimmunologist.
I appreciate any insight that you may have to offer, thank you.