Hi, Michele (mcames12),mcames12 wrote:I've been very quiet on this forum, as I was taking a break in figuring out my symptoms. You've all been so kind and helpful -- I really appreciate the support here.
So now I'm back -- 2 brain MRI, 2 cervical spine MRI's, 3 neurologists and 2 GP's later. After going nowhere with my neurologist at Yale, who insisted all of my symptoms (which have now progressed from just tingling to tremors in arms and down spine, even eye pain, as well as bladder issues) were probably result of pinched nerve in my neck. The cervical spine MRI ruled that out.
So I switched GP's and begged for a repeat brain MRI. Just had that, again on the 3T, and it was clear. Problem is, I'm not sure my GP wrote "rule out MS" on the order, because I noticed in the report I read that it said "Clinical diagnosis -- possible Lyme." He wants to do one more Lyme test to rule out Lyme (but I don't think I have that). Anyway, my GP claims that he had the head of MRI look over my scan and he saw nothing in the white matter or orbits to suggest MS.
My fear is that the scan wasn't done properly -- or wasn't read properly -- and that it missed something in the optic nerve or elsewhere. I do believe I have retrobulbar optic neuritis. It isn't normal to have eye pain that last for months (it was relieved a bit by steroids, but only temporarily). My ophthalmologist can never see anything on the optic nerve when he looks in my eye, which is why he suggested the brain scan to look behind the eye. I've had every other possible test under the sun -- all negative. I'm sick about the possibility that the scan may have been a waste of time.
I don't know what to do anymore. I can't see an MS specialist at Yale because you have to be diagnosed in order to get in there. I'm terrified I'm going to wake up with serious vision issues one of these days.
I guess I know in my heart I need to find an MS center somewhere else in my state that sees undiagnosed patients and bring all my records and scans there and start over. I'm just so fed up with this process.
Thanks for letting me vent.
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