Hi Everybody. I was diagnosed with MMS a year and a half ago. Have had 3 MRI check ups since and been found stable. Don't need surgery yet.
Since then me and my neurologists have been looking for the perfect amount of medecins to keep my seizures away. I am taking Vimpat and Keppra. And I'm doing just fine. Started to work again over a year, in short. Started to live again. But...that doesn't mean I don't feel I have MMS anymore. I almost have none seizures anymore. And I can do my work just fine. BUT I get most of my seizures when I am talking to friends or family and all that. A whole day of talking to people seems to be worse for me than a good day of work. (and I am not one sho sits behind a desk, no I clean peoples' houses, so actually physic work).
Can anyone tell me why that is????? I would like to find a reason for this so I can get this under controle too.

I would also like to add that I write screenplays too and in my nextone, the producer let me choose a disease to use in the screenplay...of course (and I think he knew I'd choose it) I chose MMS. I hope that, this way, I hope I can contribute to making people more aware of it. Unfotunatly my movies are only played in Belgium and Holland, but hey, every step counts, right?!

Thanks to everyone who can help me or would like to help me.

Nancy

I am sorry I can't help you, I was just wondering if you could let me know when the movies will be played, since I live in Holland:)
It will probably be a while but I would like to see it.

Hi. The first part of your post sounded great--diagnosed, regular check-ups, stable. But then you said you are on medications for ongoing seizures. I am NOT AT ALL a doctor or an expert, but that does not sound just fine to me. That sounds like there are a lot of TIAs at the very least and that the doctors are addressing it only with medications. Of course they say a neurosurgeon will always recommend neurosurgery, but it sounds like the opposite situation here where doctors may not be considering surgery when they should. Now that we have the Affordable Care Act, if you did not have it you can get insurance for a pre-existing condition. But in the meantime, can you go to the hospital to get copies of all your MRI/MRAs and have them evaluated by moyamoya specialists outside your hospital (you would need to send them to the other hospital)? Again, I may not know your full situation and myself may be very under-informed--my son was only recently diagnosed and we are just starting to understand MM. I apologize if this is alarmist or intrusive, but this just does not sound right to me. Wishing you all the best.

I agree with Riverumma -- "watchful waiting" is not a treatment plan for a progressive disease like MM.  Get your scans -- both the reports and the actual scans on CD -- and send them to Dr. Gary Steinberg at Stanford.  And sign up for a plan if you do not have insurance yet.

Thank you all for your reply's. Lilian: about the movies. "Bobby en de Geestenjagers" was my first. Nothing to do with the desease, but when I was diagnosed, 2 months later the producers told me that filming would start that summer, so after the bad news, it was something to look foreward to. It lifted me up. Zo I'm pretty proud of it.

The next one with MM in is called "Kite" and hopefully will be filmed summer 2014. Keep our fingers crossed!!!

To OneStoneTwoBirds and Riverumma: I have been pretty fine until now and what I had, those ticks, probably were epileptic seizures because now, with my meds adjusted, I don't have them anymore. BUT I got a phoecall of Dr. Khan, specialist in Zurich and she helped me out. She told me to still have a SPECT scan to follow up on the blood flow during stress moments. Because it's important to see where the blood goes. And I should ask for this scan every year. So in December is my next follow up, so I'll most definatly will DEMAND such a scan.

Hope this makes you a little more comfortable than me just doing nothing  :) Thank you for your advice. It's nice to know that people care. I hope everyone of you are doing great. Me.