I have MS & recently suggested I also have MAV....looking for advice

I’ve had MS for years, Dx in 2002. I’ve also had vertigo on & off for years. Over the last couple of years I had episodes of dizziness on and off, brought it up yo my doc who thought it may be low blood sugar. In October 2015 I had a severe case of vertigo that lasted a couple of weeks, I could not walk without assistance, fell everywhere, nausea a & vomiting. I eventually improved, my neurologist thought it may be ear related b/c my MRI did not show any new lesions. The ear specialist suggested it was the MS although my VNG test showed some damage to my left vestibular area. He said if it happened again to call him.
Well in May 2016 I could feel imbalanced and could feel like something was coming…then two days later I was in bed and could not move at all, after being in bed two days I was awaken at 4 in the morning with what felt like electric waves throughout my body- I felt like it was a having a stroke or seizure (or at least what I think they would feel like) I couldnot move my hands or feet for a few seconds - I was so nauseas I woke my husband to get a bucket and immediately started vomitimg - ( I hardly ate so was not sure what I could be expelling) then immediately I felt like I had to go to the bathroom and got up and tried to get to the bathroom but fell and my husband picked me up…anyway we ended up at ER & many of you have similar stories…

I’m still out of work which is so different for me, I found a specialist in NYC after being frustrated with my docs pointing fingers at each other, the neurotollogists confirmed what I thought all along- it’s not my ears- it’s brain related. He believes it’s migraines with aura b/c I rarely have any type of headache, the written into he shared made sense so I started the topamax since I’m home & willing to try anything at this point. He is referring me to an MS specialist to weigh in to determine if the migraines are a symptom of MS or another issue b/c my MRI in May showed new lesions in the cerebelllar penduncle, which also controls balance etc.

I’ve read a number of posts but have not seen anyone with MS on here and while waiting for my appt. wonder if this is more permanent condition than I thought due to the MS…


Welcome to the board. I knew a woman (forget her name now) who had MS and MAV who use to post on the Labyrinthitis Facebook group a couple of years ago. This is the page:


However, these are the three most popular Facebook groups for MAV, which you can find here: