Hi,
Has anyone taken supplements to boost the level on nitric oxide (NO) produced by their body? Has anyone asked their doctor how it might effect the progression of moyamoya?

My brother recently gave me a book by Dr. Louis J. Ignarro entitled No More Heart Disease: How Nitric Oxide Can Prevent--Even Reverse--Heart Disease And Stroke. Both of my brother's carotid arteries were 50% blocked prior to his using the supplements described by Dr. Ignarro; L-Arginine 4,000-6,000 mg, L-Citrulline 200-1,000 mg, Alpha Lipoic Acid 10mg, Folic Acid 400-800 mcg, Vitamin C 500 mg, and Vitamin E 200 iu daily. A year later, both of his carotid arteries are completely clear! Now, I'm wondering how it might effect a person with MMD.

I've sent an email in to Stanford to get the opinion of the experts before starting these, 'cuz maybe too much NO is bad thing for people with MMD. I'm curious to know if anyone else may have tried the supplements and what the outcome was. Thanks.
Kim

Hi,
I received an answer from Teresa at Stanford regarding a moyamoya patient taking supplements to boost the level of nitric oxide that the body produces. Basically it was NOT recommended as no studies have been done to show what the effects might be. For the time being, I'll hold off on these but still have lots of questions  . On the surface it seems such a sensible thing to do, but then moyamoya is one strange disease and seems to often contradict the expected.

I keep searching for any bit of research that will show some hope for arresting the progression of moyamoya. My biggest concern is that despite the successful revascularization surgeries (and I am very grateful for these), as the arteries become more and more occluded as this disease progresses, the blood flow has to be further reduced. Won't there then be less blood/oxygen available to the brain? Even if it isn't lessened to the point that I have TIAs and strokes, wouldn't that decrease have a negative impact on my cognitive abilities? I thank God for every day for my health, but it frightens me to ponder the possibility that I may yet again lose my ability to think clearly.

Much as I try to stay in the present and not worry about the future - I still do. Has anyone else been thinking about this and have any insights they can share with me?

I'd sure like to see the research move along more quickly, but these rare disease don't receive the high level of funding that the more common diseases do. It's not easy to sit quietly while waiting for a break through. I want to do something. I'm not a very patient person, but I'm trying.
Kim

Pam,  My daughter is really struggling lately too.  she's about to turn 16 this month and had her surgery 15 months ago.  she has always been an A student and since the surgery she really struggles in some classes.  she also has 4-5 migraines a week so she's missing a lot of school.  On top of that I think she is having side effects from the aspirin and now she's on Topomax (for the migraines) so we have to watch out for new problems.  I'm not really happy about the Topomax but I am anxious to help her get rid of the migraines.  She has been saying lately that she wonders if all the hard work at school is worth it because she doesn't know what the future holds.  She also HATES feeling different from her peers.  She is moody lately and her friends don't understand.   Of course that makes her more moody so it's a vicious circle.  She is going to a therapists once a week.  If your daughter ever needs or wants to talk to Destin send me an email through this site and I'll help get them connected.  Destin has made a friend here in Tampa that had the surgery a year before her and they are close in age.  It helps her a lot to be able to talk to another teen.

I am 100 % Blocked in my Left Interior Corardid ? Artery    But my external Caroid Artery Has Good Supply and is Helping supply inside  Now I Am an adult That Has Had ALOT of Strokes And Falls Alot Speaking of Falling !! I Thought I Was in Kansas & Was Dorothy from the Wizard of Oz and when I Opened my Storm Door today The Wind caught it And Flung Me Across the Porch (YES All 165 lbs. of me) Then when my Mom grabbed the Door here she came & landed under the table (on porch) Beside Me & her shoe hit me right in the front of my Leg, Now I Have A Big Knot & Bruise the size of a baseball on my leg and The top of my hand is black with a knot like a baseball, Skin on arm GONE & Bleeding, Grandaughter called 911 to tell them Grandma & Great Grandma Both fell and can't get up and is bleeding so she had to put a towel with pressure till the Ambalance got here,,,,,Luckley No Broken Bones (Miricale) They sent 2 Ambalances But Mom didn't need it-----Just Me !!!!!! If it weren't for Bad Luck I'd Have No Luck at All------LOL
I Feel Blessed & Am Sooooo Glad it is Me with MM Instead of my kids or grandkids  I Honestly Don't know How U with kids that have it----Handle it...... My Heart Goes Out To ALL Of You......
Elaine Calvert

Hi Linda,
Thank you for the article. I haven't found it yet, but while searching for it on the internet, I found another that was written way back in 1997 that was intriguing. It's not a research paper, so easy to understand. I'm thinking that there has to be some link between MM and NO and a virus. These are parts of the enligthening paragraphs:

Regarding EDRF which they discovered was actually nitric oxide: "Produced in the cells that line blood vessels, it acted on the smooth muscle that makes up the outside of blood vessels, making the muscle relax and the blood vessel dilate."

It's interesting that this production occurs in the exact location where the blood vessels get so messed up in patients with moyamoya disease.

"We now know that there are two principle functions for nitric oxide in biological systems," explains Marletta. "One is when it acts as a signaling agent--it's the way one cell talks to another cell." That's what goes on in blood vessels, in the brain and in other parts of the nervous system. Nitric oxide's other role is as a poison produced by the immune system to kill invading microorganisms."

I remember that a pediatrician at the Moyamoya Symposium last summer told of how they tested their young patients whose MRI/MRAs show Moyamoya blockage and collateral vessels for previous exposure to chicken pox. They found that for some of those children, over a period of time the blockages and collaterals disappeared. This article mentions that the nitrate level in a test subject with flu symptoms was extremely elevated. Nitate is produced from nitric oxide in the body. So they believe the body may produce nitric oxide to defend againt an invadng virus. Maybe that explains why nitric oxide levles are so much higher in moyamoya patients.
 
Here's the link to the article: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

When I find the time, I'll keep looking for more info regarding NO and moyamoya...

Kim