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Does this sound like it could, possibly, be MS?

Hi all,
I stumbled onto this website in a search for information and thought I’d post, if that’s okay. Any suggestions or thoughts are welcome. Back in July of 2015, I had a really strange “episode.” I went numb on my left side (arm, leg, face, specifically my eye), I lost my balance- it felt more like being on a boat in rough water, unable to get my feet under me properly than dizziness/room spinning. I couldn’t think or speak properly, it took more effort than I care to admit to even form the words to tell my husband to get me to bed. I twitched/spasmed in my leg and arm (again, left side). I felt heavy, almost drugged. I had a weird light behind my eye (not the sparklies of a migraine, but like someone was flipping a flashlight on and off behind me). The twitching and dizziness lasted about 8 hours, the confusion-about a day, and the numbness took nearly a week to completely fade.
I went to Urgent care the following morning, when the numbness hadn’t faded and they rushed me through tests, thinking I had a stroke. That was ruled out quickly. They called it a freak migraine and said it wouldn’t happen again, go home. I did. About 2 weeks later, it happened again. I went back, and they referred me to neurology. It took awhile to get in for that appointment, and the episodes went from 2-3 weeks apart down to a week apart, and then down to a few days apart- long enough for me to just start recovering from one when the next hit.
Doc sent me for all kinds of tests: MRI/MRA with and without contrast, CT Scan with and without contrast, EEG, EKG, gallons of blood were drawn and sent off, I was sent to a hematologist because my blood was too thick but he said it wasn’t a big deal and wouldn’t have even been noticed if the Neuro hadn’t been looking for everything. I went to an opthamologist to rule out pseudotumor cerebri because the birth control I’d previously been on (that caused all kinds of havoc for me) is now known to cause that. 8 months and a battery of tests later, Neuro tells me that she’s tentatively diagnosing me with migraines, though she isn’t comfortable with the diagnosis, she doesn’t know what else to test for. Everything came back either normal or nearly normal or didn’t fit with my symptoms. She insists on trying to treat me for headaches (offering medication to block the pain), but I do NOT have headaches with these episodes.
It’s been about a year and a half now. I’ll get really bad ones, like that first one that took me to the ground sometimes. And sometimes I get “mild” ones where I’ll just be sitting around doing something and my face and arm go numb and I feel a bit “off.” The mild ones were happening roughly weekly, until now it seems I’m always numb or bordering on it. The bigger ones…those seem to come on at random sometimes I’ll go 3 months without it, sometimes I’ll get 2 in a week.
Nothing doc has suggested helps, and I don’t think being numb all the time seems like a “migraine” to me. I’d pretty much given up on any answers for any of it, when a friend of mine was telling me about her niece. Evidently she has similar symptoms to mine and her doc is telling her it may be MS. After some general research (I am aware google is not a doctor and WebMD is the enemy, lol) it does seem to fit. What I’ve read though, seems like at least one of those tests I was put through should have shown something to indicate the possibility.
My question for you fine folks is…does this sound like it could be MS, and should I be discussing the possibility with my doctor? She never mentioned it in any of the tests she ran. Or, if not, anybody with ideas of what might be going on with me?
1 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

The way it all started does initially sound suggestive of an MS attack but MS wouldn't typically continue on like you've experienced and it would be highly unusual to not have any of the expected neurological suggestive/consistent test results eg MRI's, VEP, LP, neurologically abnormal clinical exam etc at all.

With the symptom pattern of on and off every week or two for well over a year, visual light flashes and no objective abnormal neurological evidence, something the likes of 'silent Migraine' would actually sound similar enough to be a more likely possible causation than MS would be.

Other names for silent migraine are "Acephalgic migraine, Amigranous migraine, Migraine aura without headache and Migraine equivalent" (https://migraine.com/migraine-types/silent-migraine/) and migraines are known to cause MS like experiences without the objective neurological abnormalities, so it could really be migraine related.

IF you are not confident with your neurologists diagnosis and or your doubts our starting to worry you, i would suggest you seriously consider getting a second opinion with a neurologist that specialises in migraine. If nothing else it will help clear your mind, confirm your diagnosis and get you a better suited treatment plan....

Hope that helps......JJ
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