I met with my neurologist yesterday to discuss what he described as "nonspecific white matter changes" in my brain on a brain MRI with contrast. When we'd talked on the phone before the appointment, he didn't seem to think he would be doing additional tests immediately, and he said he didn't think the white matter changes fit any pattern for any specific disease, which I'd thought was a good sign. But by the time I had an appointment two days later, he had decided to go ahead with an MRI of my cervical spine and some evoked potentials testing.
My symptoms have been one (maybe two) episode of very temporary double vision, some dizziness/lightheadedness that was even worse when I drove or rode in a car (the visual images buzzing by me seemed to irritate me), some tingling in the back of my neck and head, visual migraine symptoms (zigzag lines in periphery) that started this past November and only happen once every few weeks for about 30 minutes, with no headached), and very slight tingling in my left hand and left foot. I had a previous period (off and on for two months) of dizziness/lightheadedness about a year ago that at the time was attributed to my mild bradycardia (slow heart rate) and low-ish blood pressure. NONE of my symptoms have been very dramatic -- all have been subtle and possibly explained by other things. I've also had a lot of fatigue these past few years but attributed that mainly to being a new mother and to working full time and getting older (39).
Anyway, I'm now terrified. It looked as though I had at least 5 spots on my brain MRI -- I don't know the size of the spots b/c it wasn't a full-sized image. They were scattered about. I did not get a written report, either (didn't think it advisable given that I'm likely to try to interpret it myself using Dr. Google). I tried to call him back today to ask more detailed questions, but I missed him.
What I want to know is this: how often does it happen that these abnormalities or changes or whatever appear on a brain MRI but don't indicate MS? What if someone has that many spots (not just one or two) -- does that mean it's more likely that they have demyelinating disease?? I know the cervical MRI and other tests will provide more data. But those tests aren't for two weeks, and i'd like something else to go on. If those tests come back "normal", then he''ll do another MRI in 6 months (or if I have new symptoms, whichever comes first). If there's no change in the 6 month MRI, he'll let me go with no further testing.
I guess the thing is that my symptoms have been subtle and not disabling. The double vision episode unnerved me the most, but it was so short-lived, too.
Also, I have mild to moderate sleep apnea; I was told to learn not to sleep on my back. I've read that sleep apnea can cause white matter changes, but when I mentioned this to the neurologist he wasn't too interested in that theory.
PLEASE share either any medical knowledge or personal experience that might help me get through this and understand the different possibilities.
Thanks! I'm struggling, my emotions swinging all over the place, as I try to adjust to this new possible reality.