Hi Sara,
I am curious of that myself...my sister was told by Dr. Steinberg that he would recommend she be tested because she has had Bell's Palsy at least six times and he said that is unlikely the true culprit then she started having extreme symptoms like I had, she is even seeing my neurologist because as he said "they don't know if it is hereditary" anyway she had an angiogram done and it came back with the results as NO MM, but she is still having difficulties!! She just had a new set of MRI's done on her head and neck..the neuro is looking into everything because of the symptoms she is displaying!!  I hope you niece is doing well and that the numbness goes away
Your Friend,
Kathleen

Hi Sara

In my case it took four years from symptoms to mm vessels recognized.
Does her Doctor know about MMD?

Dr Steinberg has patients from infants to 68 years old.

I don't think their is pre-determined time line.

You can send her MRI/MRA to Dr Steinberg for evaluation.

Hope That Helps

MM Family
Kevin

hi.
my personal "opinion" on this matter is that if you were getting obvious symptoms ie. the numbness, FROM moyamoya, then it would be advanced enough to be detectable on an MR. there are plenty of other possible causes for numbness.
if the doctors are looking for MM [that's the impression i got from your post] then the diagnosis would be pretty quick.
moyamoya is the narrowing of the arteries and subsequent growth of small "moyamoya" vessels. this is a very physically visible condition [when you know what to look for obviously].

keep up the monitoring but if i were you i'd now be stepping back from [the stigma of] MM and looking for the more probable cause.


edit: sorry.. i realise this sounds like a very negative post... just in a kinda matter-of-fact mood!

I know in my sisters situation they have checked for MS, Lupus, and a few others that all came back that she was negative for??  They now are thinking fibromygalsia (sp?).....All I know is that my once very strong sister is now in constant pain and has a become a shell of her old self

Sara wrote on Sep 28^th, 2006 at 3:14pm:

Hi Sara,

I'm sorry to hear your niece is having problems. I sure hope you get some answers. (You too Kathleen.)

IMO, I don't think they know exactly what stage MM will appear on an MRI/MRA. While I agree that there are plenty of other possible causes for numbness, I still have to ask if you recall the other members here that have MMD, and not only had numbness, but a stroke also, and yet their MM did not show up on their MRI, but rather on the angiogram? That is why the angio is the definitive diagnostic test that shows the actual moyamoya vessels. Every case is different.

I know you'll keep close watch and try your best to get some answers.

Please know I'm keeping you and your niece in my continued thoughts and prayers.

Mar

Also, Mar,

You say people's MM didn't show up on an MRI... Did those people have MRA's, too?

Thanks!

- Sara

Sara wrote on Oct 3^rd, 2006 at 4:07pm:


Hi Sara,

I wish I could remember whether they said MRI or if it was in fact a MRI/MRA, I don't know for sure, but I do remember the dialog being similar, in that the doctors felt the angio was much too invasive, but then after the minor stroke they did in fact do a Angio and diagnose MMD.

I gotta tell ya Sara, I looked & looked for hours the other night for those posts, hoping you could talk to them personally about the details and perhaps get some answers. I always like to have references for everything that I state, cuz I’m getting to old to rely on my memory, so I did try to find the posts themselves for you to read, but the problem is not only that I can’t remember who it was, (I was hoping you’d remember) but while I was researching, if I tried to go back to the very beginning of a members posts of who I thought it might be, I could only go back to their last 50 posts, not the beginning, where you would think they would have stated that. Another problem I had was, if I did go back the last 50 posts, it all “timed out” on me and I’d lose it all, which made my research for you almost impossible and frustrating to say the least.

The problem with getting any personal or medical information from a past member is, usually once a member has their surgery, most stop coming back to the website and they may have useful information, like in this case or perhaps for new members.

I'm so glad to hear Emily hasn't had any more numbness. It's most likely another cause, but I was concerned and hoped you might remember the other members with similar problems and perhaps get their take on it.

Mar

Thanks everyone!

I just wanted some feed back. I guess we will see if she has any more numbness before we do anything more invasive. I still may ask my sister if she wants to send the tests to Dr. Scott.

From what the doctors told her, there is no narrowing and nothing abnormal about her tests.

So, thank you agian everyone!

- Sara

Thanks, again everyone.

I sent Dr. Scott an email and he said "Most of the time, the MRI can show the moyamoya quite well". He also gave me a Dr. in Houston's name to talk to. I already had Dr. Dauser's info, but it made me feel good that is who he would refer us to!!

Thanks everyone!

- Sara