ExtremeLife1986 wrote on May 25^th, 2005 at 2:23pm:

Got to love moya moya and the things this condition can throw at you

For the many new mmer’s who come to this website for information, and are scared and know nothing about this disease, as I did, I have to say again, for them, that moyamoya does NOT throw anything like a viral infection at you!!  MM is a cerebrovascular disorder. Unfortunately there are people who have other things associated with this disease, but not a viral infection in respect to being associated with moyamoya.

There are many websites where you can read up about viral infections and see that a viral infection can be as simple as a common cold, so yes, you can have a viral infection along with mm as with many other common problems, and yes a viral infection can possibly effect you and your mm. For instance, you could get dehydrated and it could trigger problems, fever, etc, but the facts to date are, a viral infection is NOT related to or the cause of MM from any research to date. The cause of MM is uncertain, so to imply mm is related to or in association with a viral infection, without stating what viral infection it's associated with, and the facts, is misleading to people learning about this disease.

I hope you can see why I’m concerned. Some of the most serious communicable diseases known to medical science are viral in origin. Viruses are spread from one person to another. So, I hope you can see how that may frighten new people coming here for MM information.

Yes it's been said that some of the following conditions are associated with mm: Like... Meningitis, Down's syndrome, Sickle cell anemia, etc, but that does NOT mean that they were caused by mm, (or vice versa) but rather associated with mm in some individuals.


ExtremeLife1986 wrote on May 25^th, 2005 at 2:23pm:

Generally i have been told as have everyone most people with moya moya at some point have/had a viral infection. I am currently still fighting one according to my blood work and my surgeon. I am going on a 5 day anti-biotic called k-pack i believe is called.

I'm also confused about the above statement. I'm sure that every person has had a viral infection at one point, but certainly NOT because they have moyamoya. Also, as I've read, antibiotics are useless against viral infections.(??)

MM is a terrible disease and my heart aches for the problems you and others have suffered, God love ya’s! I pray one day soon we will have all the answers, but for now, with it being so rare and not clear to the medical community, I feel we have to get the information out there as accurate as we possibly can to help others as well.

Mar

And someone mentioned that MoyaMoya is an autoimmune disease....which means certain part of your own body fights its own organs.  I thought it was interesting reading that as I have several disorders that are autoimmune diseases (diabetes, B12 defiency (pernicious anemia), premature ovarian failure)...so I would imagine as time goes on one would develop another problem after another.   As far as viral infection...my doctor that deals with allegeries said when I was having this wierd rash....80 percent of the time they never know what causes the allergy..as a viral infection would invade the body for a period of time then disappear....so everytime I get hives (once or twice a year) I am thinking oh no Im having some viral infection happening...I put myself on my allergy medication (Zrytec)...and after few weeks on it..its taken care of.   But from what I read on MM....it doesn't say that MM causes the infection ...but I would imagine that your body's immune system may be suspressed to allow an viral infection invade.    :) CarasMOM

Carol,

If moyamoya is an autoimmune disease, as you say, could you please cite the appropriate references that say that??

Here's what I came up with trying to help me figure it out, because so many diseases are in the Autoimmune disease catagory. http://autoimmune.pathology.jhmi.edu/whatis_disease.cfm

Mar

Mar,

Let me aplogize i am getting my words mixed up. Once yes i know what moya moya is exactly and as everyone knows no one knows where or how moya moya comes from. There is no link between moya moya and viral infections and things like that. I am not fighting a viral infection i believe the correct terms are a clymedial anti-body that i have to take anti-biotics for. Im not shure if those are the correct terms but i am close. I do apologize for any mis information i have given out. I would like to know how ever where you get your refrences from and everything cause last i been told no one really knows what causes moya moya as studies cant link anything.

ExtremeLife1986 wrote on May 26^th, 2005 at 1:45am:

I would like to know how ever where you get your refrences from and everything cause last i been told no one really knows what causes moya moya as studies cant link anything.

Certainly sweetie, a lot of references are right here on the website under Links. Some major University’s’ and MM specialists’ links here are very informative, and from those websites they also have links to studies and research. Etc. I would be more than happy to share any specific information and cite references. Simply state what specifically you want references to. I believe learning all you can about this disease is the most important thing we can do. Read, Read, Read. It can save lives. That’s a very good practice to look for and ask for references, it keeps us accurate in helping others. Also check dates, because some MM information out there is outdated. I talked to a man not so long ago, who said he wasn’t seeking a neurosurgeon for his MM diagnosis because he read that adults don’t do well with the surgery, and you know for a fact that’s NOT true, but unfortunately, the outdated information does in fact state that. I believe it’s so important when stating certain medical facts that we cite references, as not to harm others and learn together. Our common goal is to help each other in any way we can.

Mar

Mar,

Well said!! Your knowledge in MM impresses me very much. Yes I know it is all there on this site if you take time to read but in my case that is not available because of the language. Every time some of us get carried away in discussions about causes or characteristics of "ugly moyamoya" you take us down on the proper level again and for that I thank you. Both you and DJ have that ability!

Take care and thanks,

Annica