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 and welcome to the MM family!

MM is a progressive disease that narrows and closes the carotid arteries. The progression is different for each individual. That said, ultimately, the progression will cause a lack of blood flow to the brain cutting off the needed nutrients and oxygen and at some point the result is stroke and/or hemorrhage.

MM is noted by the collateral vessels that are weak and fragile but are trying to provide blood flow to a blocked artery.

Not to frighten you but being down this path with my brother who went misdiagnosed for four years, had TIAs, two strokes, blood on the brain and a dissected carotid artery, I would be very concerned and especially since you have already had a stroke.

Seeking immediate medical attention to your recent TIA and previous stroke and diagnosis of MM would not be exaggerating your potential problem. To the contrary! In my brother's case, by the time I got him to a MM specialist, it was nothing short of a life saving effort. He could not speak and had no abstract thinking ability. If I can save one person from going through what my brother endured, I am darn well going to try.

A TIA is a mini stroke. That is a warning to take immediate action. Have you had more than one TIA recently? If so, I would not wait two weeks for an appointment.  If you are having TIAs, I would seek immediate medical attention and especially since you have already had a stroke.

We are here to support you so please ask any questions.

Keep us posted.

Lore   

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

I just wanted to say welcome to the group.I really can't add anything to the great advice that Mar and Lore have already given. They are exactly right. What I can share is my daughter's experience to emphasise how differently this disease can  progreses and how quickly it can get real seriouse. Things I wish I had known. My daughter was first diagnosed in Jan. 02 and by April 02 she had suffered several strokes and had lost all use of her left side,she was like and infant. She was in a wheelchair for about a year. She can now walk with the assistance of a leg brace but still has not recovered functional use of her left hand.This was seven years ago. She was only 5 at the time of her diagnosis.This disease changed her whole future, but if you can treat it early it doesn't have to. There is no way to know how quickly it will get this seriouse, please don't wait, consult with a specialist like Dr. Steinburgh.You have nothing to lose but possible a better quality of life to gain. If you have questons for the group ask away this is a very informative group of people. We're here for support always....Many prayers.
Mary Grace

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.