I’ve been diagnosed with both MS and MAV. My MS nurse says (as does everyone I know with MS) that migraines are actually a chronic problem with about 30% of people with MS, and many people start with migraines and are later diagnosed with MS. I know the last 5 years of my life have been a series of neurologists standing around staring at my MRIs, scratching their heads and saying “Hmmm, classic MS lesions, but not classic symptoms, let’s say migraine for now”. I got the definitive MS diagnosis about 18 months ago, but I am like one person here mentioned - a brain FULL of MS lesions but few MS symptoms.
The way to understand that is to realise that we only use a small amount of our brains (some less than others ha), and people like me are ‘lucky’ in that the lesions have so far only hit a few places which affect me. The rest of the lesions are in parts of my brain I don’t use. (If you saw all my lesions, you’d be realising how little of my brain I use) Whereas some others will very few or even just one lesion, but it’ll be smack on the place that controls, say, swallowing, or breathing, and they have a hell of a rotten time.
If anyone has any MS questions I will be happy to help if I can. Meanwhile, I shall sit here and feel sorry for myself for having both MS and MAV…oh and menopause to add to the fun. Yay.
Jemma thanks for that post as i am concerned. Ive been battling ocular migraines since 2004 which was the last time i had a brain mri. Ive seen neurologists, ents, and other docs since who all say i get migraines. My disequillibrium is what disturbs me most. I get tingling at times but nothing serious.
I dont know why but i always seem to get worse after ive had a baby which i hady fourth six months ago. Im still nursing which may be making my hormones out of whack. Somedays im ok, but others not!
If you’re getting worse maybe ask for a new MRI? 2004 is a fair while ago.
The MS literature (and people with it) says that the hormones during pregnancy calm down MS symptoms, and they can flare up again big time after the birth of a baby. Some were even looking at simulating pregnancy hormones as a treatment! Obviously that would not be good for anyone in the long term.
I get numbness and tingling and I never know if it’s my MS or migraine. I find the whole thing very confusing. Also, I have a lesion on my cerebellum and that is a classic area for balance problems with MS, which always gets me confused - am I having an MS flare or a migraine? Even the drs don’t know, they just say, try the drugs, if they work, it’s migraine, if they don’t, it’s MS…