My quick history:
2010: optic neuritis right eye, confirmed on orbit MRI but with negative brain and spine MRIs. Four months to 20/15 from 20/40 but it took over two years to regain full color and contrast. Still see snow to this day, but hardly notice.
2015: Fatigue and strange exertion related symptoms following a one day splitting headache and mild fever. Also had my first opthalmic migraine in this post fever period, and continue to have them once every three months or so. A check up found I was seronegative for NMO-IgG, with negative brain and spine MRIs. Exercise still leaves me feeling weirdly fatigued most times, even when in shape.
2018 (last week): optic neuritis left eye, also confirmed on orbit MRI but with negative brain MRI. I'm 20/100 this time around. Spine MRI and LP next week. Blood anti-MOG results are pending, to repeat with CSF and in conjunction with MS panel. Also seronegative for NMO-IgG.
My doctors are leaning toward anti-MOG autoimmunity versus MS or NMO.
Has anyone experienced similar?
Can I ask you some questions?
In 2010, what did they give you to treat optic neuritis? Did they have a diagnosis at all? Did they think it could be anti-MOG already?
In 2015 they still didn't test you for MOG antibodies?
Now in 2018, have you received your anti-MOG test results? If so, are they giving you medications? If so, what? Do you know for how long you'll get treatment?
Thank you so much. I'm going through something similar. If you want, we could speak by private message.
All the best and good luck!
I ended up seeing some amazing specialists who apparently have better eyesight and time management than all the radiologists and neurologists I've worked with over the last eight years, because they pointed out one small periventricular lesion I've had since before my first acute optic neuritis in 2010. And funnily enough, I recalled that in 2004 I went to an optometrist, thinking my vision was strangely blurry. I believe that was actually my first episode of optic neuritis.
I just assumed that anyone staring at that gray polyester carpeting found in most offices saw an electric snow storm in it like I did!
To answer your questions:
- 2010: nope - no treatment, no diagnosis. They didn't start testing for MOG antibodies until 2011 as far as I understand.
- 2015: no, but two different time periods for NMO IgG, both negative.
- 2018: they tested me for MOG, MAG, and NMO IgG again and all were negative.
- Treatment (for now): I'm starting teriflunomide (aubagio) in a few weeks. It took about two months for them to convince me into it. I'll be on it as long as I can handle it or until something better comes along.
Sorry to hear you're going through something similar. I've heard from more than a few people now with MS that it can be a really long road to diagnosis, if it is MS at all. I wish you the best as well.
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