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Multiple Sclerosis Message Board


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Next Steps?
Jun 30, 2016
Two years ago I had some strange "episodes" I had some vision issues which I can best describe as kind of wavy vision with like a solid grey circle in my left eye. It was solid and I couldn't see through it and it was a mid grey colour. It happened a few times but never lasted long. I had pain in the very back of my eye with it. Naturally I ran straight to google and self diagnosed with ocular migraines and thought no more of it. Not that long after I woke up feeling odd. Just a bit out of sorts. The next thing I knew I woke up and I was on the bathroom floor and had vomited. I can't remember getting to the bathroom and was quite vague afterwards. Two weeks later it happened again. My company wanted to make sure I hadn't had a seizure so I had to have a brain MRI. The findings were as follows


IMPRESSION:

1. This is a noncontrast study. There are a multiplicity of deep white matter and periventricular

white matter foci of abnormal high signal with a greater distribution in the left hemisphere than the

right, and some of these lesions are seen in the subcortical white matter as well. There is no

involvement of the brainstem or cerebellum or cerebellar peduncles or the genu of the corpus

callosum. These findings are suspicious for a demyelinating process such as multiple sclerosis.

2. The remainder of the brain is unremarkable."



I actually only got the report recently when I went online to check the results of a lumbar MRI. The hospital just sent a negative for seizure notice to my employer. I never followed up on anything with my own doctor. Since jan this year I've had random symptoms. The worst is pain in my legs. Predominately my right leg. It's pain that's there 24x7. It's like my leg is chewing silver foil and the bottom of my foot tingles. The left leg isn't as bad at all. My legs do this weird thing, usually at night where the left will fly up when I'm laying down then straight after that the right one. I've actually kicked my husband doing it. I'm covered in bruises from hitting my leg to try and stop the pain. My legs feel really heavy and I'm having to make an increasing effort to walk and always feeling like I'm walking around a corner even when I'm walking in a straight line. I probably look like a drunk sailor as I have a habit of sticking my elbows out for balance! I frequently bat at my arms thinking I've got a spider or something on me. I've tried Gapupentin for my legs but it hasn't worked and made me put on weight so I stopped taking it. I get word blindness a lot and find myself making up words to fill in the gap. I recently got horribly lost too when I was driving with him. It went from being funny to him saying "have you had some kind of stroke" and taking over the car. That one hasn't happened since then thankfully. I have problems writing with a pen and put words in the wrong order. Less so on a computer thanks to spell check. I'm finding the cognitive issues upsetting as I've always been sharp and I'm only 45. I've been practicing writing and trying to go slowly. It's like I know what I need to write but my hands write something totally different.

I have some continence issues in that I don't always realize i need to use the bathroom until the last minute and don't always make it in time :( The room frequently spins when I stand up or look up but then my blood pressure has always been on the low side. 100/72 is around my normal.

The final weird thing was I was sitting in the bath and my leg was like ice cold. I couldn't feel the hot water on a patch on the back of my thigh at all. I did go and see an ortho in case it was my back but he did a lumbar MRI and no issues there. He did a hip X-ray at my request and that was fine too.

I had an appointment to see a neuro in July but just got a letter that he's resigned and there are no other MS specialists in his practice. I've called around other places but can't get into anyone before November.

I'm wondering what I can do in the meantime. I know it could well be any number of things and I think MS is a long shot but the leg pain is driving me crazy. It's hot here right now but my leg feels like it's in an ice bath and I just can't get any relief from it.

Other than that I'm in good shape. I eat well, exercise as much as I can and keep my weight down.





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