Hi, I live in Belgium, where the chance of having MM is also very VERY slim!
So sorry to hear you also live in a country where there is so little known about this disease. I went to a university hospital here in Belgium where they had about 9 to 10 cases already. 9 were operated, 8 were succesfull. I  haven’t had the operation yet, because the disease hasn’t progressed enough yet.
Has something to do with the blood vessels (puff of smoke) that hven’t developped enough yet which is needed to flow part of the brain that has to be cut off for about 30 minutes during the operation, otherwise I could get serious damage because there is no oxygen going to some parts of the brain.

But what I wanted to say is that my neurologists and the ones in the university hospital have decided that together with specialists in Utrecht in the Neatherlands. They have doctors spacialized in MM. I think one of their specialists is Professor Regli. He’s Swedish or Norwegian, I think.

So if you can find a way to contact them or have your neurologist contact them  (I insisted to do  this with my neurologists) and have your info sent there. Maybe that’ll get you a little further.

I’ve been told Dr Steinberg (specialist in California) also gives second opinions just by watching the scans and so.

Good luck!