I brand new so if this has been posted before, sorry I didn't check first.

I found out in 1999 that I had this. I cried for days.

When I was four years old I had a stroke.  In winter of 1998 I had tingling in the face, so I went to urgent care. the Dr. said not to worry and sent me home with sleeping pills. He said take these and get plenty of rest. Well I talked with my chiropractor and he set me up with a nueralogist. I think he saved my life.

When they (nueralogist) got together they talked about me having surgery. It was on my last MRI that they discovered that I was healing myself.

I have to take a low dose asprin a day. But I thank god for all the gaurdian angels out there that prayed hard for me.

Hi Melissa,
Welcome to the website. Can you explain what your neurologists meant when they said that you were healing yourself?
I don't mean to scare you, but as Becky mentioned, Moyamoya is progessive - it doesn't get better all by itself, it just gets worse and worse, until it eventually takes your life.
There are very few Moyamlya specialists. Many who have read about the disease believe that the collateral vessels that Moyamoya patients grow are evidence of the body fixing itself. The new collateral vessels do provide other routes for the blood to travel to the parts of the brain that are being starved of blood/oxygen due to the blockages in the main arteries, but these aren't strong enough to do the job for very long. They are smaller and less able to handle the pressure of the amount of blood that needs to flow through them - they enventually burst and cause a bleed into the brain; a hemoragic stroke - these can do very serious damage or cause death.
So, please ask more questions of your neurologists. I can't stress strongly enough just how important it is for you to get copies of your tests (MRI/MRA, angiogram,...) to a specialist is this disease and to do so without further delay.
It sounds as though your doctors have you on what is often referred to here as the "Wait & See" treatment. Though it is comforting to think that all is well, the reality is that most likely you will have another stroke if you continue with this treatment. Please, please look further.
Kim

Melissa1975 wrote on Oct 6^th, 2008 at 5:39pm:


Hi Melissa - I don't mean to scare you, but it sounds like those neurologists are not so familiar with MM.  If they saw what sounds like the collateral vessels (to me anyway), then they are highly mistaken when they said you are healing yourself.  MM is a progressive disease, as others have already posted.  There is no cure, per say, but treatment in the form of surgery.

My advise - get the opinion of a MM specialist....

-Shari

DHuynh I am sorry to hear about your mom.  It sounds like she may have had it for a bit before she told you and it was overlooked. Most doctors don't know about it or think it only happens to Asians (like in my case). I was foolish and went back to my regular doctor not the Er after my stroke. I belived I couln't have a stroke I was only 22. That Doctor said I was faking not being able to grip her hand and sent me home with some musselrelaxers. The next day my headace was worse and my Husband took me to the ER like he wanted to the day before. I was diagnosed with a stroke but not MM. The nurologist i had at the time gave me a bunch of tests since she could not determin why i had a stroke. It wasn't untill a nuroradiologist, who just got back from a seminar that talked about MM, Said I had it.  The nurologist said no since I was not asian. I went to the Mayo Clinic in MN and got another opinion. The Nurologist there said it looked like I was getting better then he did a SPECT(stress) test on me and I failed and he wanted to do the surgery that day. But I was on Cumidan(blood thinner) so I had to let that medication leave my body before I had my surgery. In 2 months All I thaught about was I hoped and prayed i would not have another stroke, I was lucky!!!! It is your life get a MM specialests opinion. There are quite a few nurosurgens listed in this sight to see if you can find one close to home. I still recoment Dr.Stinberg's team. He can help you or sugest some one He trusts.

I hope you get another opinion. I will pray for you. This is progressive disorder. I would be devistated to hear that we lost you.
Becky

Hi Mellesa, Shari is right, may be your doctor doesn't know about MM, I go through about 3 yrs not feeling well with weakness on arms or/and legs, and headache and heartattack like symtom, my family doctor keep tell me that I have stress, try to learn to relax and give me chill pill, even CT don't show anything, until 1 lucky night I was dianogsis MM and all of doctors that night don't know how I still alive.
You have to push hard or may get 2nd or 3rd opinion about it, if you have MM, you don't want to wait, it is danger.
Take care
Kieu