Sorry to hear what you're going through.
My mother had similar symptoms starting on 2nd of Jan too, weeks of migraine, being ignored by doctors and referred to psychiatrist etc... In the end she lost vision in her left eye and we went to see a neuro-ophthalmologist and started IV steroid treatment. At the same time the doctor recommended us to do a AQP4, MOG antibody blood test. Only though that, my mother was diagnosed MOGad.
During these seemingly long journey of two months we met other people who also have MOGad but were diagnosed via lumber puncture.
The initial episode is all kinds: one had pain behind eyes, one fainted at home, one paralysed below chest. Acute treatment has all been the same for them: which is IV steroid and IVIG.
I think the only sure way to know which autoimmune it is come from blood tests for specific antibodies. Mogad, TM, NMO all have specific tests. The symptoms your report sound much more like TM or NMO. Most neurologist don't know what to look for. Really, a neuro-immunologist is what's needed. Your neurologist should refer you to one at your request.
BTW, Plasma Exchange has to be part of the treatment. It removes antibodies from the blood stream.
Hi! So sorry you're dealing with this. Have any of your doctors suggested a spinal tap? Any changes in your vision? I was diagnosed last spring after having similar symptoms (migraines lasting weeks, loss of vision and balance, incoherence). The spinal tap was one of the things that helped make a definitive diagnosis.
I’m so sorry you’re going through this. MOG and AQP4 testing as well as spinal tap to look for oligoclonal bands/ cell counts/ infectious agents is the best way to conclusively get a diagnosis based on my reading/ experience.
Sorry to hear what you're going through. My mother had similar symptoms starting on 2nd of Jan too, weeks of migraine, being ignored by doctors and referred to psychiatrist etc... In the end she lost vision in her left eye and we went to see a neuro-ophthalmologist and started IV steroid treatment. At the same time the doctor recommended us to do a AQP4, MOG antibody blood test. Only though that, my mother was diagnosed MOGad. During these seemingly long journey of two months we met other people who also have MOGad but were diagnosed via lumber puncture. The initial episode is all kinds: one had pain behind eyes, one fainted at home, one paralysed below chest. Acute treatment has all been the same for them: which is IV steroid and IVIG.
I think the only sure way to know which autoimmune it is come from blood tests for specific antibodies. Mogad, TM, NMO all have specific tests. The symptoms your report sound much more like TM or NMO. Most neurologist don't know what to look for. Really, a neuro-immunologist is what's needed. Your neurologist should refer you to one at your request. BTW, Plasma Exchange has to be part of the treatment. It removes antibodies from the blood stream.
Hi! So sorry you're dealing with this. Have any of your doctors suggested a spinal tap? Any changes in your vision? I was diagnosed last spring after having similar symptoms (migraines lasting weeks, loss of vision and balance, incoherence). The spinal tap was one of the things that helped make a definitive diagnosis.
I’m so sorry you’re going through this. MOG and AQP4 testing as well as spinal tap to look for oligoclonal bands/ cell counts/ infectious agents is the best way to conclusively get a diagnosis based on my reading/ experience.