I am 50 years old.  I just recently had a TIA.  When I went to the ER they did a CAT scan and 2 MRI's.  They said that I have Moya Moya and had a previous stroke.  I do recall being told 10 years ago I had MoyaMoya but did think anything of it.

That's where the Neurologist left it.  So I started my own research and now I am really concerned.  I do have an appointment in 2 weeks.

How concerned should I be at this point?  I don't want exaggerate my potential problem.

Hi captainhuek,

I can’t say it any better than Lore just did, but I’d like to add my support by saying, you CANNOT exaggerate problems with this disease, IMO!! This is a very dangerous, life altering, PROGRESSIVE disease that should be treated promptly and hopefully BEFORE a stroke/hemorrhage occurs. TIA’s are warnings of that stroke that comes with this disease.

Although the progression differs with every patient, like Lore said, the fact still remains that it does get worse over time, and along with the progressive narrowing of the brain blood vessels, a patient's clinical condition also worsens, and without surgery/treatment, the majority of individuals with MMD will experience mental decline and multiple strokes because of the progressive narrowing of arteries.  Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage, so with all those facts as we know them is why I believe you should be VERY concerned and why it can’t be exaggerated. 

I don’t say this to frighten you, but rather educate you to this rare disease. I urge you to continue with your research and learn all you can. It will help you make informative decisions in a world where many in the medical field still do not know enough about this rare disease.

I don’t know if you viewed this Stanford video under

Links

on the website, but if not, this may be helpful in your research in understanding MMD as well.

Stanford video – Moyamoya Diseasehttp://www.moyamoya.com/stanfordvideo/moyamoya2.wmv

Please seek a doctor who has EXPERIENCE in treating MMD and will promptly lead you in the best direction for your case. This is a successfully treatable disease IF treated correctly.

Mar

Hi Captainhuek,  Welcome to the mm family. Lore and Mar have given you very good advise. I was diagnosed with mm in 2002 at the age of 51. I had indirect by-pass surgery in 2003.