About 9 years ago I developed a progressive blurring of vision in my left eye which was eventually diagnosed as optic neuritis. I had an abnormal VFT and VEP, as well as an MRI with 6 or 7 abnormal small lesions. After seeing a neuro-ophthalmologist and an MS specialist, the conclusion was abnormal MRI consistent with MS, but no bell ringing dx. That was fine with me, because I was otherwise feeling fine, and the vision gradually came back to normal. I just kind of never went back for followup--figured there were other people who were really sick who needed the time with this very busy neurologist. About 2 years later, I was convinced to have another MRI by my GP. This one still showed the abnormal lesions, but now a new larger streak behind the frontal lobe, considered atypical. So, since then I have been seeing a neurologist with regular MRI's. Nothing has changed, and I have been able to charm my neurologist into not hanging a diagnosis on me, though he is frustrated with me because I have declined getting a spinal tap or taking any immunomodulators. He tells me I likely have a benign form of MS; I choose to not submit to that diagnosis. I haven't had an MRI for 2 years now, because he says there's no sense in getting one if I'm not going to do any thing about it. The last few months my vision is less crisp in that left eye again, though my prescription hasn't changed. My eye doc was concerned about the "look" of my optic nerve, and I had another VFT which was fine. I'm having a bit of color desaturation especially when I exercise or when I'm warm, similar to the first episode but not nearly as pronounced. My question is, am I being foolish not getting another MRI? I'm a nurse, and I micro analyze everything---my neurologist and I disagree philosophically, but he says my arguments are logical. He has left it up to me to decide when I want another scan. I take fish oil caps with D and am otherwise feeling well. Just a few other little foibles...chronic numbness and burning in my right foot; I also was diagnosed with an indolent kind of lymphoma but have needed no treatment. I think of myself as a healthy person. What do you think?
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Q: Am I foolish not to have follow up MRI's after optic neuritis and abnormal MRI?
Hi Tricia,
I don't think you are foolish, nor apparently does you neurologist. You are making an educated decision to avoid a diagnosis. The funny thing is there are so many people wishing for a definite diagnosis.
You have been good to keep in close touch with your doctors. The numbness and burning are indicative of MS, although they could mean something else, too. You may want to get a diagnosis if you plan to take any of the disease-modifying drugs.
One problem with waiting may be a period of limbo where you may have to delay a wanted treatment. Talk with your neurologist about this question.
Good luck.
OMG, I'm dealing with the same BS as you! I had optic neurits in my left eye about 4 years ago. I went on the 3 day course of IV steriods and it resolved. The MRI I had during the time when I had optic neuritis showed a few lesions (one or two). I gave my neurologist I go to for my ADHD a copy of it and he told me that I probably have MS and wanted me to go on some shot where the short and long term side effects are pretty bad. I told him I'd rather take the wait and see approach. About 5 months after I had the optic neuritis I changed family physicians. I told her what had happen and she ran blood on me and from what I told her about my lifestyle along with other symptoms combined with the blood results that showed antibodies for mono that mono could've been the cause and they should've tested me for that during that time. Also, I've been to eye doctors since then since I've always needed glasses just for regular check ups and the last 2 doctors I went to told me that if I hadn't told them they wouldn't have known that I had a previous bout of optic neuritis.
So I go to see my ADHD neurologist today and he tells me that he'd like me to have another MRI even though I don't have any symptoms and have been fine the past 4 years.
Oh yeah and the grayed out vision you experience when exersizing or over heating is called Uhthoff's Syndrome. It doesn't mean that you're having a relapse its just after your optic nerve has been injured it reacts in that way. Google it to read more about it.
I'm venting but I agree with you. If I'm ok then why do I feel as if some of these doctors try to find something wrong. Before I decide what to do I plan on making an appointment for my yearly physical with my family physcian to ask her advice on how to handle this or if she reccomends another neurologist I can go to. I know I didn't give you an answer but know that your not alone 
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Thanks, Vicki.
I suppose I am the antithesis of a hypochondriac :-) I'm always looking for a doctor who will tell me there's nothing wrong and/or takes an extrememly conservative approach!! I convinced my pulmonologist to baby the abnormal lesions in my lungs along for 3 years before a positive PET scan necessitated the surgery that diagnosed my (thankfully) wimpy kind of lymphoma. Even now I keep negotiating with my oncologist to minimize the number of CT scans I get to follow up on that.
My conversations with my neurologist go kind of like this: me--why would I want to inject my body with a substance that has clearly identified side effects when I feel perfectly well? him--it's because you ARE doing so well that you should treat this aggressively! me--yeah, if I'd started on treatment 9 years ago, you all would have said, see how good it's working! him--(rolls his eyes and sighs)
I'm in my mid 50's, and am an incurable optimist. My plan is to remain healthy and active, but I have a friend who delights in telling me I'm in avoidance and denial.
Every once in awhile, though, I wonder if I'm being irresponsible by not being more proactive with this. The thing is, I have friends who are totaly disabled with MS, yet I know I could also live out the rest of my days with no progression at all. (Plus, I truly don't know if I actually have MS---lesions have always been described as 'atypical'. My official diagnosis is "Abnormal MRI".) I have hypothyroidism as well, so I keep trying to find some kind of autoimmune link to all of these foibles. Bottom line is, I do feel well, stay busy, eat in a very healthy way, keep researching stuff, and drive my docs crazy. Good thing they like me, or I'd probably be black listed!
This recurrence of the slight vision blurriness and color desaturation is what has me doubting my wisdom. I'm going to blow my deductible away this summer with another CT scan; why not get the MRI and see if there's anything new-----but then even if there's mild changes I doubt I'd do anything about it, so what's the point? I don't think having to wait for treatment would be a problem. I have great (howbeit very expensive) insurance. Just not sure if "ignorance is bliss" is the best tactic! So now you see why I'm a problem child! :-)