The Culprit to My Current Hell

I finally picked up the disk of my MRI from March of 2015. I had already seen this slide in my neurologist’s office but now I can show you what my brain looked like when this “relapse” was not even that bad! The report states “There is a new 1.6 centimeter hyperintense T2 lesion involving the left cerebellar preduncle” and though there are a couple other new lesions throughout my brain this is the largest and the one causing me all my grief. So really it is the only one I really care about right now. Specifically speaking it is the one causing my dizziness and visual symptoms (like vertigo). Again, this was done in march when thing were really not that bad. Things are incredibly worse now so I can only wonder if this lesion looks any different over 4 months later since it has progressed so much.

Let me try to some up the weird visual symptoms I have attributed to Oscillopsia, Nystagmus, Vertigo and dizziness. I don’t know what this is, I don’t know what to call it, it fits into the definition of so many symptoms. So this is sort of what it feels like; imagine spinning in a swivel chair really fast for about 10 seconds and then stomping your feet on the ground causing you to stop abruptly. Then you try to stand up and walk. This is why I would say I don’t feel like I am spinning because I imagine feeling like I am spinning is like spinning around in the swivel chair where this is what it feels like to try to walk AFTER spinning around. I turn my head 6 inches to the side and it looks like everything is zooming past me like staring at the lines on the road in a speeding car. I also seem to be able to track my eyes meaning follow a moving object with my eyes smoothly. If I stare at something and move my head left and right the object I am staring at looks burred like it’s moving really fast not fuzzy. Sometime I feel nauseated but most the time I am used to it enough that it doesn’t get to me though most the time my stomach does not feel completely settled. Obviously with everything “zooming around” my balance is crap and sometimes I feel like I have really poor depth perception when reaching for something like a pen or a cup of coffee. The vertigo sensation is aggravated my my head orientation; if I am sitting at my desk things feel steady enough for me to surf the web a bit but I hate trying to read. Now, if I lean my head back on the back rest so I am looking up at the ceiling I feel like I am spinning in space. I bring my head back down and it takes a minute for me to feel like I am no longer spinning. Same thing if I turn my head to the side so my ear is facing the ground. If I turn my head left or right too fast it feels like the world is still moving in that direction for a few seconds after I stop my head as if there is a huge momentum at work.

Again, I am no longer sure what to call this but I do see an ophthalmologist on the 23ed so maybe he can shed some light on this. Ultimately I just want to start Lemtrada because between that and all the steroids I am hoping it will calm the inflammation down enough that the world will stop moving and I will have some steady vision. I am waiting for my insurance to approve the cost of a shingles vaccine (please no anti-vaxer comments haha) and then I have to wait 6 more weeks after that before I can start Lemtrada. Ugh, patience…

10 Responses to The Culprit to My Current Hell

  1. John says:

    Hi Matt, Thanks for sharing the latest imaging. I notice you wrote that you have a T2 lesion involving the left cerebellar preduncle, but the imaging seems to have the lesion on the right side. I'm not a doc, or MRI Tech, but do know that the optic nerve crosses mid-brain to the opposite side; (right eye left brain etc.) Although an eye patch, or blackout lens on eyewear may help on the coresponding eye with dizziness, vertigo it won't do anything for depth perception. It might be worth a try to play around with an eye patch. You might look like a pirate, but if it help, even just a little, I imagine it would be worth it. God speed to you for Lemtrada. John

    • Haha you are looking at it backwards. So on the right image I am facing up. Left and right is determined as if you are looking at me face to face. I think it is dumb, it is MY right but the viewers LEFT. An eye patch works for when your eyes are not aligning properly, mine are, my visual issue (ironically) has nothing to do with my eyes or optic nerves, it's all in the brain where the signal from the eyes is "interpreted". That is why I showed this lesion – all my symptoms can be attributed to a cerebellar lesion.

    • John says:

      Understood. Thanks for the reply Matt. I get my 3rd Tysabri infusion later this month. I do worry about antibodies caneling out the medication, but I think I'll stick with it for 2 years since I'm JC+. By then you and others will have posted videos on Lemtrada and I hope yours (and theirs) will be very positive. Hang in there Matt, hang on. Life will get better for we who suffer from M.S.

    • I think you shouldn't worry too much about that. But thank you :p

  2. John says:

    Hi Matt- I poked around looking for stuff on my M.S. I did find something of a definition of the symptoms you described that matches with the area in the MRI image you shared: "Cerebellum Vestibulo–ocular reflex dysfunction". If that's what you've got, I guess a drug called Betahistine helps some of the symptoms. It may help some of mine too.

  3. Yeah I already looked into that and tried some vestibulo-ocular retraining exercises but my neuro and I do not think that is what I am dealing with :p but thanks!

  4. John says:

    I make a comment and then realized I made a mistake and delete it. My cog-fog in action. You're in my prayers as we battle this insidious thing, M.S. and all it's symptoms.

  5. Lol yeah, I do the same thing on Facebook. But thank you!

  6. Tania Broad says:

    Do you find that you feel really light-headed a lot?

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