I posted a couple weeks ago.  My daughter is still undergoing testing to figure out why she is having stroke symptoms.  She had a MRA and a MRI, and her neurologist said she does not have moyamoya.  However, I am still not convinced.  Her symptoms are exactly what I have seen many describe as Moyamoya.  She has continued to deteriorate over the last month, and we are very scared.  Her MRI does show strokes that she had in the past, but doesn't seem to have new activity.  Yet, she continues to decline. My question is whether you can have an MRA/MRI scan that shows that the arteries look fine and still have moyamoya.  Would the scan definately show the blockage?  Has anyone else had similar problems with diagnosis?

I also posted this in the diagnosis topic by DJ and someone suggested I also post it here...

Hi Emsmom,

I’m so sorry to hear your daughter is having stroke like symptoms with no definitive answers as to why. We know the frustration here all too well. We’ve learnt from experience that not all doctors have all the answers, so keep looking and pushing until you get the right answers.

Regarding your MRI/MRA question, in pediatric cases, that is usually the first diagnostic test for a MM diagnosis, or it would determine if more extensive testing like an Arteriography is necessary. Is your doctor experienced with MMD? That’s very important! If your neurologist is not experienced, I have to agree with Kathleen to seek another opinion. This disease is underdiagnosed due to lack of experience with this rare disease.

I don’t know your daughters specifics, so I have to mention the fact that there are several other conditions that can cause a stroke in children. Heart disease is the most common one, but other disorders can cause stroke like symptoms as well. I can’t emphasize enough the importance of seeking another opinion if you’re not getting the answers you’re comfortable with. It saves lives.

Please know you and your daughter will be in my thoughts and prayers.

Keep us posted.

Mar

Hi again,

I was thinking about your question and realized that I probably didn’t answer it the way you would have wanted me to, and I’m sorry about that, but here’s why. You asked about the accuracy of the MRI/MRA in diagnosing MMD. I’m a little uncomfortable in answering this exactly, because here on the website I’ve seen many medical professionals in the past that didn’t know enough about MMD miss the MM diagnosis, but in all fairness, I don’t know if it showed up on the MRI/MRA or if it was the medical professionals that missed it because they didn’t know what to look for due to lack of experience. MM is a rare disease, and like I mentioned in another post, members have stated that they personally did not get a MM diagnosis by the MRI/MRA, but rather the Angio. (Arteriography) But, the question is...was MMD present on the MRA??…I don’t know. That’s where an experienced medical professional knowing all the specifics would have to answer that question, but you would think an MRA that shows the blood vessels would show a positive finding for MMD, but at what stage is another question.

When I entered your question in the search engine, here are just a couple of explanations that came up:

http://intl.ajronline.org/cgi/content/full/174/1/195


http://www.indianpediatrics.net/sept2000/sept-1005-1009.htm

When in doubt, it's always good to get a second opinion.

My continued prayers.

Mar