I am 39 a mother of 2 and have just been sent to mayo clinic in jacksonille, fl... in 07 my issues started with horrible headacches, dizzy blurred vision nausea and such..i went to see my fp and he had tests done which led him to send me to uab birmingham to a neuro there after some tests it was determined i had neurovasculitis and so i was put on meds like bp meds, seizure meds, et.... this helped until last year when everything hit again with a vengance......my neuro now decided i showed more signs of moya moya than anything and decided to send me to mayo cclinic for verification and now i am seeing dr. eidelman, dr. hanel and several others to determine what to do about my mmd.. yes they have determined that is what i have and how to fix this the right way..

my questions are:

does mmd cause changes in personality?
what are some of the actualy sypmtoms some of you had that lead you to this point minus the strokes???
i actually have been having absence strokes so mine arent real noticable but they have caused some damage... i was just curious on some other peoples symptoms.
also, if any has had surgery how long has it helped and is the surgery premanent or temp?

sorry i am just really terrified and not sure what to expect.... i have a 13 yr old daughter who is terrified and a 17 mo old son...

speaking of that my neuro at mayo clinic told me that he feels this could have been caused from me developing toxemia with my 1st pregnancy as moyamoya can stem from that....

I think there are so many different stories about how people were diagnosed.  My daughter (18) found hers because of headaches.  She was lucky that she never had a stroke.  She has had surgery on one side and now there are signs of MM on the other.  There is no telling when she will need surgery again as everyone progresses at different rates.  She still suffers from headaches...she's fighting one right now. 

As for personality changes...again, I think you will get different stories.  the brain is a complicated organ.  Some people say that can see some changes after strokes or surgery others don't.  I think it really depends on the person. 

Hi, We are relatively new at this MMD as well.  My daughter was diagosed in January this year.  She is 22.  Her symptoms were daily headaches, and frequent migraines.  We have been trying to figure this out for about 4 years of Dr. visits, neurology visits, etc on the headaches.  It was quite by accident that we found out she had MMD.  She was having an MRI done for some persistent jaw pain from a car accident 2 years ago and her jaw kept locking.  That is unrelated to the MMD, but through the imaging, they found the narrowing of the right ICA. She had a TIA in Jan which took us to the ER and more tests which led to the MMD diagnosis.  No personality changes, except for moodiness, which is atributed to the frequent headaches, no doubt.  She is just as terrified!  We are trying to find a surgeon now, which is so difficult.  We live in San Antonio TX and there does not seem to be anyone here in my area that have experience with MMD.  We had planned to have Dr. Steinberg at Stanford CA do the surgery (he has seen her scans and offered to do it) but our insurance will not authorize it.  So frustrating!  Found a Dr. in Dallas that we are hoping to see soon as our insurance authorizes it.  Hang in there.  It is a long road, but the surgery does seem to have alot of success.