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.
Hi, I think it was you, but not sure that posted a response to my post on the Neurology forum the other day. It was about the SSRI medication change and the onset shortly there after of neuological symptoms. Let me know if you are the same magickat. I have been on this forum for about a month and the people here are supportive and caring. Are you new here? My first MRI two years ago showed multiple white matter changes(lesions) too! My repeat MRI's every six months for the last two years have shown no changes in origional lesions , no enhancement, and no new lesions. I had a spinal tap one year ago that was negative with no O banding. For now my dx is ADEM which is a monophasic illness. If I have any new lesions or another demilenating event then my dx will probally be changed to MS. My mom has a rythem problem with her heart and her heart rate stays low. They give her medicine for this but I am not sure of the name of it. I wish I could help you understand all of the possivle things that can cause white matter changes, but I have been researching for two years and thier seems to be a lot of possible causes. I still don't know for sure what caused mine. Whether it was a reaction from my immune system from the drastic untappered SSRI change, ADEM or MS. The only way I have been able to handle the stress of not knowing for sure what I'm dealing with and my vision disfunction, is to try to keep other things on my mind. This is not hard with three boys ! I am glad you are here and I hope the nice people here can answer a lot of your questions.
I'm very sorry to hear what you are going through. Unfortunately I don't have a lot of time to write at the moment, but I wanted to quickly respond to your comment about not getting a copy of your MRI report, before I lose track of this thread. I understand you are not wanting to be even more anxious than you already are, but I want to strongly suggest to you that you do keep copies of all of your tests - MRI's, evoked potentials, labs, everything. Sometime down the road you may find it extremely valuable to have this on hand, and it's a lot easier to keep track of this stuff as you go along than to try to go back and dig it all up at a later date. Also, some docs will charge for entire file copies, but usually will give you single reports at no charge (my experience anyway).
I wish you the best, and please keep us posted with how you're doing. I'm certain you will get some good information and support here as time goes on.
Thanks so much to both of you for your responses. I feel so suddenly alone (even though I have a wonderful husband and daughter and good friends) -- it's just such a shock at first.
Santana8, yes, that was me! Nice to see you again. It helps me very much to hear your story, and I find it encouraging that in your case there have been no further white matter changes in your MRIs. What is your vision like now? You mentioned on the other board that it had been gradually getting better. Can you drive yet?
Doublevision, that's very good advice. Thank you. You are right -- that's smart and makes a lot of sense. I will ask for copies of my reports. I plan to seek a second opinion after I finish this round of tests, so having all those reports on file will be essential. I guess it will also help me learn more about my brain and symptoms and about neurology in general.
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