Hello everyone,
My name is Eric, 33 years old, live in Scandinavia, and I think I might suffer from MAV. I have searched all over the internet for people who were experiencing the kind of ‘boucing’ ‘rocking’ feeling when walking and only when walking. I’ve described it to walking on a trampoline to neurologist and there’s a thread here, where LOTS of people describe exactly the kind of feeling I have, where as it is nowhere to be found other places on the internet.
My story is like this:
I have suffered from unilateral strong headaches since 2011, from out of the blue. They turned into muscle like chronic tension headache with monthly or so attacks of migraine like type. Very bad, sidelined me. I also suffer greatly from neck pain and stiffness.
Then in November 2013 I had my first bout where out of the blue the ground started bouncing, rocking, moving when I walked. I did not have problems when sitting, driving. At the same time I had bad fatigue, sleeping problems and neck pain.
Eventually after a month it went away.
Then in May 2015 it hit back with a vengance and has been there ever since. The same fatigue, the same pain, all of it. I have also had some other symptoms like joint pain, muscle pain, now some mild myoclonus (shock jolt like movements in wrists, ankles, like before you fall asleep). And the fatigue, the ever present overwhelming fatigue. This has made me scared for cancer too.
I am being followed in neurology department, but they’re not very helpful so far. I have a bunch of white spots in my brain, so that complicates matters. I am not convinced they’re the cause though, as they haven’t changed in 4 years.
I also tested positive for Lyme in a normal test (none of that special lab), because my doctor thought my symptoms could sound like lime. IgG was positive, IgM was negative, suggesting past infection or late infection. I am waiting to go down that road, because of all the weirdness and politics, but eventually if nothing else is found I will pursue it.
In any case, this is the first place I’ve found where there are others who have the exact same feeling of walking on a trampoline, so it can’t be completely wrong.
I appreciate any comments and suggestions, if there is medication I can try, please let me know.
Best,
Eric