Okay, so I saw my neurologist today about my follow up. I am on a waiting list for a follow-up MRI which will take a long time here due to some serious backlog. Nevertheless, we did the physical again and reviewed symptoms. Went over my chronic migraines and decided on putting me on Aimovig for them.

Now, my MRI doesn’t look pretty. Lesions all over the damn place. And yeah, if you look just at that… it really does look like Multiple Sclerosis. They even said that on my file when it was reviewed. Yep. Not pretty.

BUT when you do the physical… I ace it. I’m good, man. And I was still good this time. Aside from the vestibular symptoms (which could be migraine or whatever- not too sure about that side of things yet- but yes, that sucks). Everything else, I am all good on. Not ‘everything’… I mean everything on this physical… strength, reflexes, eyes… all working as they should be working.

Do I have Multiple Sclerosis symptoms?

Yes, Yes, I do. I have fibromyalgia. I have chronic migraines. And there is a Lot of overlap between all of those to say who the hell knows which category they belong to.

So, yeah, I could give you a Whole list of symptoms I have that overlap. But with fibromyalgia, I could do that with a whole lot of conditions. That is FM for you. It really has a boatload of symptoms and it mimics a lot of other conditions because of that fact.

Do I have Distinctive Multiple Sclerosis symptoms?

No, I do not. Nothing that screams, Yes THIS is MS. That is why I do so well on the physical. And have had no symptom that screamed MS. Nada. Just all those weird symptoms that are quite likely fibromyalgia and migraine, and more than likely both. Aside from the vertigo, dizziness, disequilibrium, and cognitive issues of the last 2 years which I say are Not migraine but can’t be ruled out as Not migraine either, yet.

Nothing definitively MS anyway. And I concur with his assessment. It all seems on par the course, aside from some weird symptoms I have never been able to account for (that are potentially FM symptoms, but I never had so severely or come and go like)… but FM is weird like that. So weird and random. This dude specializes in MS. He knows his stuff. If I had any indication of MS he would tell me so and bump me up the line for an MRI. I don’t. He definitely thinks it is unlikely and we just need to watch it… because of the neurological irregularity, better safe than sorry. Which will mean watching it for a bit before completely ruling it out.

So very unlikely I have multiple sclerosis

I just look like I do neurologically. However, some people do, he said and do not ever have symptoms. Also, we should remember with migraine with aura I have migraine lesions and that complicates the picture…. as some of those lesions Are migraine lesions (Before this last MRI I had one in 2009 and it showed migraine lesions way back then, just migraine ones but definitely lesions as far back as then- typical for chronic migraine with aura really).

So what do you do when you very likely Do not… but there remains that slim possibility you just Might?

Well, you get regular MRIs. And you see the neurologist every 8-10 months for a bit until they can definitively rule it out. Or something very specific to MS happens that rules it in. And that is that.

I thought it would be an easier Yes or No answer. But it turns out it is like every other damn disease I have. Never easy to diagnose for me. Never an easy answer. Also wonky results. Maybe my brain is eating itself. Or maybe I am the first zombie in the zombie apocalypse and my brain is slowly rotting away until I begin to crave brains… we will never know.

But very positive news for me because I do not need any more health conditions and frankly this whole vestibular issue plus all my other pain issues… is rough enough right now. My cup doth overfloweth with crapola. I don’t need any more crapola. So I thought that was the best damn news I have heard since I got the first MRI back really. Sure, my brain isn’t ‘pretty’ but, hey, it’s the only one I got, man. And it seems to be doing fine-ish. it is a bit cognitively compromised with all this dizziness… but, hey, it is doing the best it can.

Not to mention maybe Aimovig will help with my chronic migraine. And maybe we will then determine if these vestibular issues are migraine or not by process of elimination- if the Aimovig works for it, it is migraine, if it doesn’t, then it is something else… or most likely it works a little bit and something else is also going on (viral ear issue or something like that). But we shall see what that brings forth when we get to it. One problem at a time.

I rather like this. I was concerned. Moderately anyway. Not a whole lot. But moderately because of the uncertainty of the diagnosis because I had no confirmation from a second MRI. I thought what if I Do and it gets worse before they treat it or confirm it? Not the sort of thing you want to leave hanging, eh? Now I am really not at all concerned. Same old same old. I can focus on this vertigo issue. And the migraine disease. Work from there.

Can’t have a better appointment than that really. I feel like not only has that weight been lifted off of me but I have the potential of getting a migraine treatment that might actually Do something. And I have the vestibular testing coming up and between that and the migraine treatment, I feel like there Will be progress on the vestibular issue front. Rarely does one leave a neuro feeling rather… hopeful. But I do. I sort of do. Not too much. Don’t want to get carried away. But a wee bit.

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6 thoughts on “Neurologist appointment: I Probably don’t have Multiple Sclerosis?! Yay!

  1. Hmm, wish I could be happy for you, but this all sounds waaaay to familiar. For 15+ years, I lived this exact situation. Migraine with aura? Check. Weird but non-specific neurological symptons? Check. I even had one clinically-diagnosed case of optic neuritis. But it wasn’t until 15 years past the optic neuritis attack, and seeing several neurologists who insisted that the brain lesions on the MRI were from migraine, that I got an MS diagnosis.

    For me, the diagnosis came too late. Sure, I was immediately put on Copaxone for a while, but my MRIs had long since stopped showing any new lesions. No new lesions == copaxone is working! But not so fast … in my case, no new lesions = secondary progressive MS (or, the doc speculates, perhaps I had primary progressive MS all along … my case is not “textbook MS”, so sorting out the subtype is impossible). But no new lesions is great, right? Wrong. In progressive MS, new lesions no longer appear in MRIs, but rather damage to the brain itself (rather than just the myelin) happens. In my case, I have severe brain atrophy … until my neurologist ordered an MRI with “NeuroQuant Analysis”, we had no idea that the size of my hippocampus (serves as our memory center) was in the 5th percentile. That atrophy is a classic marker for progressive MS (and other things, to be honest, like Alzheimer’s).

    Summary: for your next/upcoming MRI, ask your doc if he/she can order it with NeuroQuant. NeuroQuant performs a measurement of the sizes of various components of your brain and compares to the sizes of healthy people to determine if there is atrophy. One other thing to do in order to assess possible brain atrophy is to have your eye doctor perform a OCT scan at your next eye check-up. OCT (optical coherence tomography) measures the thickness of your retinal nerve fiber layers, which can be eroded by MS. My retinal layers are severely atrophied … something that both my neurologist and I were well aware of long before she ordered the NeuroQuant analysis on the MRI. I think that my poor OCT scan results were telling us something, even back then (5 years before I learned of my brain atrophy), had we listened. Perhaps (probably?), progressive MS had already made its appearance and it would have been too late to really do anything about it.

    Liked by 1 person

    1. Thank you! This indeed worries me. That they will wait too long for some ‘for sure MS symptom’ because my current symptoms overlap with FM and migraine… that it will be really far gone by the time they get around to it

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