Hello all,

as you ol' timers can probably tell I am new.  I read the NYT article about an hour ago and the symptoms startled me.  I have not been diagnosed with MM.  I have, however, had many of these symptoms which could be MM or a number of other things.  

I was wondering if any of you who have been diagnosed ever had the experience of only mild episodic symptoms lasting for perhaps an hour at most, then disappearing for a week or weeks.  (in my case this is a twitching of my left eye-lid, little-finger, and sharp quick numbing of my left arm, plus many years of migraines (left side), and some of the light-headedness and headaches during/after sex)

I am definitely not asking for diagnosis, just experience.  

any feedback would be much appreciated

Best,

Robert

Robert,

I'd like to take the time and say welcome to our boards.  We are happy that you found us!  I'm also glad to see that the New York Times article us drawing some attention to this disease.  

I'd like to ask if you have been to a neurologist yet?  I must tell you that if you suspect that you might have this disease that you should get an MRI as soon as you can.  With such a scan, they should be able to tell if you have the disease.  They will probably even need to run more tests.  

If you have not been to a neurologist, then I suggest that you look at the forum that discusses surgeons on the site.  The surgeons listed are moyamoya specialists and should be able to help you.  

The next thing that I suggest you do is read all you can on here.  There is so much information that it will seem overwhelming at first, but offer a wealth of knowledge to you.  If at any time you have questions for any of us, we are here to help.  No question is stupid.  But just a reminder that we are not doctors and can only offer our opinion and our own personal stories.  

The symptoms you are describing can certainly be signs of moyamoya, but one cannot be certain.  The only way to tell is to see a specialist.  And if you find out that you do in fact have the disease, then act quickly as this is not something you want to wait around and deal with.

I wish you lots of luck in your journey and offer my prayers to you and your family.  Remember....read, read. read.

[smiley=hug.gif]
Michelle

Hi Robert,  [smiley=wave.gif]

I’m sorry to say, all the symptoms you mentioned, could possibly be signs of MM. Please know though, the management of MM is very successful IF treated promptly by an experienced MM specialist. My advice would be to get to a doctor ASAP, if not for anything but to rule it out. Read all you can about MM, you just may find that you’ll then know more than many in the medical community, that’s how rare it is. But the more you know about MM, the less chance of a misdiagnosis, that we also too often see. All the info is right here on the website. Here is the post that DJ set up for the general process. http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571;start=0#0

Good Luck! You'll be in our thoughts and prayers.  
 
Feel free to ask any questions or contact any of us.

Mar

Hi Robert,
            They're right your symptoms can absolutely come and go that quickly thats one of the not so wonderful things about MM then people tend to put it off because its temporary, with MM you cannot, it is very progressive the quicker the better you seek help, and yes a MM SPECIALIST is what you need they have the most knowledge about this rare disease. We will help you as much as possible if you unfortunatly have this, this is the place to be, the people are wonderful and caring and always willing to help. Our thoughts and prayers are with you.
                                   Nancy :)

Thank you all for your input.  I will read and check out the specialists close to me asap.  the sypmtoms have worried me for some time, and this really helps.

all the best,

R

First, I am not a medical professional.  My 41 year old daughter has MM.  She had a STMCA bipass in 1999 and an EDAS on the same side in 2004.  Dr. Robert Spetzler, Chief of Barrow Neurological Institute, Phoenix, AZ did both surgeries.  We have also been to Dr. Steinberg (Stanford) for a second opinion - he concurs with Dr. Spetzler.  

Prior to all of this, my otherwise healthy, very fit daughter had a rushing water sound in her left ear.  Neither MRI or MRA indicated MM.  Additionally, it's doubtful that any of the neurologists or neurosurgeons in the metro Denver area would have interpreted these films as indicative of MM.  MM is a VERY specialized area of neurology.  You cannot/should not rely on MRI, MRA or the local neurologist to determine whether or not you have MM.  If you have any suspicion your symptoms MAY be MM, try to go to one of the neurosurgeons that specializes in MM.  Sometimes MRI & MRA films can be sent via computer for review.  The SPECT scan is critical to determine blood flow.  The ANGIOGRAM is an invasive test, not to be done lightly, but it is critical to determine whether or not an individual has MM.  Bottom line - MM requires treatment by a neurosurgeon who specializes in MM.  Caveat - no MM neurosurgeon will proceed with MM surgery until he/she has an angiogram done on the patient at his/her institution, so there's no point in having an MM angiogram done by anyone but one of the specialists.

My daughter is doing well now, taking care of her family and biking and skiing again - thank goodness.  We remain vigilant however, and it is comforting to know both Dr. Spetzler and Dr. Steinberg are available.

Best,
Roni Olsen
eolsen6400@aol.com

My daughter's symptoms were rapid in progression, and my wife knew something was wrong so we not our doctor set up an MRI.  Doctors just say take a pill, and call me in two weeks.
She started out with headaches one week or two.  They lasted a short time then went away.  
Then she started getting nausous with them for a week or so.
Then she was throwing up with them.
A sharp MRI Tech at Morton Hospital in Taunton MA said he thought it was the rare disease Moyamoya.  He was right.
We headed to Children's in Boston MA.
Her hands and feet would get tingly too at times.
My daughter also says she has a wooshing sound now after the surgeries. Dr. Scott of Boston Children's says not to worry.
I am so lucky that I have a good wife that made going through all of this easier.  She is my soul mate.
Going through this kind of a thing makes you appreciate things more.
My daughter is doing fine. She is very beautiful and my little baby, she is 11.  My son is 14 and is very supportive of his sister.
My prayers are with all of you on this board.  Someone should get moyamoya on OPRAH.......

Re:  "someone should get MM on Oprah"....just wanted to let you know...one of us did try getting it on not only Oprah but other shows....so far no luck...that is why we all were so excited about the NYTimes article !!!  ;;D

My continued prayers to all that come to this site even just to tell their story or post endlessly within all of us..such a great site.  Hugs,  CarasMOM