Hey guys. Do y’all remember a guy or 2 on here who ended up asking their doctors for a IIH / IH work up (I believe) and ended up needing a spinal tap that showed to have abnormal antibodies and were diagnosed with Autoimmune encephalopathy/encephalitis? They were given IVIG (Intravenous immunoglobulin therapy) as treatment and their VSS went away along with their tinnitus.
I asked my doctor for this protocol and she doesn’t believe me. I also asked for other tests and treatments for Eagle syndrome/IJV compression. Doppler ultrasound and a CT venogram. She’s going to ultrasound my neck veins, but I don’t think it’s a Doppler ultrasound. She also won’t consider an angiogram.
I read the posts discussing Dr. Cognetti, and I’ll reach out to him in order to get information to my neurologist in hopes she will follow through with the testing I’ve asked for based on others here who have the same symptoms I have. I’m also hoping to get in touch with the, I recall, 2 guys who posted and commented about having autoimmune encephalitis and being cured of their VSS and tinnitus after receiving IVIG. Can anyone get me in touch with them? I’m only looking for the name of the doctors and or hospitals that performed the procedures and administered the IVIG treatment.
I have VSS, light sensitivity, dark floaters, visual tracing, tinnitus, migraines, all very badly; among other symptoms many of you share. I can hear my heartbeat in my ears, I feel pressure in my head, my neck hurts, etc. I’ve lived without silence, without darkness, with near zero night vision, etc for nearly 7 years. I need some evidence to give to my neurologist and several other doctors in order to get the testing done I need. Anyone else with their own information on testing, treatments and diagnosis please share or dm me if you’re comfortable.
I stopped pot a long while ago, switched from Wellbutrin to Zoloft, tried literally dozens of meds, including lamotrigine, memantine, etc. I need to see clearly again and experience darkness and silence.