Hey All!

Does anyone know how long it takes for MM to "show up" on an MRI/MRA from the onset of symptoms?

I am asking because my niece has been having "numbness" and told my sister. They had testing done and they came out all clear. I am the one who has MM, so I am all worried! My sister is also concerned and will continue to watch Emily to see how she does.

I guess if it isn't showing up yet, IF it is MM, then her MM has not advanced very much??

What do you guys all think??

- Sara

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

Thanks Kathleen.

I guess we aren't the only ones with this question. I just worry about Emily. I hope your sister gets a proper diagnosis soon!

- Sara

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

I can not say how long it takes to show up..........I can say that your Dr needs to know what they are looking for Robert had a MRI one month after symptoms started and was given all clear, 3.5 years later a DR told us and then showed us on his recent mri and the one from 3 years ago the presence of MM..........Mike

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!

Emily wrote on Sep 29^th, 2006 at 6:06am:

there are plenty of other possible causes for numbness.

I agree...are there anyother "illnesses" that run it your family?  For example, I was tested for Diabetes because by brother is diabetic...they thought my numbness could have been caused by that.

-Shari

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 :-[

Before I was diagnosed w/MM, the docs  thought I had MS because of the lesions that showed in the MRI.  Thankfully, I had a neurologist who was willing to do more tests.  He ordered a cerebrial angiogram (looking for MM or Lupus) that was how the doc knew it wasn't MS, but MM. Good luck!
Lee

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

Hey All! Does anyone know how long it takes for MM to "show up" on an MRI/MRA from the onset of symptoms?

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. [smiley=hug.gif]

Mar

Thank you all for the responses and to those of you who have called!

My internet has been down and I haven't been able to check in. It is actually still down. But, I am checking from work :)

Her doctors are familiar with MM and they do not detect it on the MRA. I know that an angio would be a more difinitive test. But, I think if she had a lot of MM vessels, they would be showing on the MRA. If it is too early for it to show (if it is what she has), then I am sure she'll be okay.

I went a year and a half with out being diagnosed. I know I was lucky, but I just don't think it necessary to go through such an invasive test if her MRA came out all clear.

I appreciate all the thoughts and prayers. Emily has been doing well. No more numbness that we know of.

I may mention it to my sister to send her films to Dr. Scott. I would sure rest easier...

Thanks again! Is there anyone who had numbness, had an angio and wasn't diagnosed the 1st angio?

- Sara

Also, Mar,

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

Thanks!

- Sara

Hi Sara

My first angio showed an occluded right corodit artery.
But the neuros did know what it was!That was January 2000.
In Febuary 2004 I my second angio and new Radioligist just out school knew what it was.

My [smiley=twocents.gif]
Kevin

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

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

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

Hello Sara,
  I was 33 when diagnosed,  I had symptoms of weakness,numbness to the right side,speech difficulty, fatigue, memory difficulty. I had 2 episodes of my right side going numb. That's when they did the test. They knew something was wrong because the mri/mra's were not normal. they showed the narrowed arteries but, they couldn't figuer it out. The neurologist set up a arteriorgram, that's when they saw the puff off smoke and the occluded arterie and were able to make the diagnosis MM. My Mother the same situation her diagnosis was with the arteriorgram.  
    Hopefully soon  they will figure out what is going on with Emily.                 Lena
                             

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

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

Also, Mar, You say people's MM didn't show up on an MRI... Did those people have MRA's, too? Thanks! - Sara

an MRI will not show MM - but it will show lesions like strokes, tia's, tumours, etc...
and MRA is the closest to an angiogram, without the risks, showing the blood vessels etc, and this is what will show MM, but i think it's usually only used after the diagnosis, when they know what/where they're looking.. in my experience anyway. but it may more commonly be used in searching for MM, now that MM is more commonly being looked for.

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