I have been wondering this for a while.  Let me start by telling those who don't know about my son (Trey) that he was diagnosed with MM at 10 months of age after two strokes.  He is two now and seems to be doing very well, except that he doesn't use his left side like he does his right.  He does have some developmental delay, but he is doing great. 

My question comes from him being so young and unable to tell me if he is in pain or if something is just not right with him.  Question: Does MM sometimes come as a single medical problem or does it always come along with other medical problems? I have read where it is supposed to usually show in Asian, or with other medical problems, in girls not boys, hereditary/not necessarily hereditary.....so I thought that with some of my information not being quite where it needs to be, you know as clear as mud, I would ask for a "Poll" to see how many multiple problems with MM vs MM only there are out there.  It seems at this point that Trey only has MM. 

I am sure that this post could be worded differently.  I am sorry if it seems a little rough, I didn't know exactly how to word it.  Even after typing it I don't know how to word it.

Thanks for your help, if you could just ping or bump or whatever the computer lingo and let me know if this disease can come singular or always multiple.

Thanks,

Michell

Trey---MM only

Michelle -

That's a very interesting question!  I do have another medical condition that is also very rare.....called Arthrogryposis.  It's a genetic muscular-skeletal (sp?) disorder.  It presents as tight muscles.  For example, I can't straighten my arms out to their full extent.  I really only have it very mild....you really wouldn't know unless I told you.  My younger brother has it a lot worse....or more noticable I should say.  We both used to see a geneticist at Dupont Hospital in Delaware.  Beleive it or not - another Dr. Scott!  (Dr. Charles Scott).

Anyway, when I was first dignosed with MM, my mom e-mailed Dr. C. Scott to ask him whether there was any link between MM and Arthrogryposis.   He e-mailed back (he remembered both my brother and I even though we hadn't seen him in nearly 20 years!) stating that there was no link (he did know about MM, by the way).

But, I would be very intrested in seeing responses to your post!

-Shari

CharlotteK,

Hi... I was reading your post, and was wondering if you've been surgically treated for your moyamoya disease.

The symptoms you describe do sound very concerning!  If you have had the surgery, I would call the neurosurgeon and ask for a letter of necessity -- it sounds like you really need an MRI or MRangiogram to figure out what's going on.

If you haven't been surgically treated, you should get in touch with a moyamoya specialist ASAP.  You can probably get started just by having your studies from four years ago sent to the doctor of your choice.

Jenny

Hi Michell,

All we know for sure so far, is that Moyamoya is a lone cerebrovascular disease, but I'd bet there are many questions driving scientists’ and researchers crazy because of the implications of other associated problems. In the research I’ve read, they talk about the coexistence of other conditions in some cases, but they keep saying that it suggests a genetic predisposition, and they can’t seem to find the link to answer if it’s coincidental or not, but implications none the less, yet, so many factors involved. It’s too obscure for my understanding. I read in one study where they believe the elevation of a certain protein could be a candidate for the pathogenesis of MM. I hope I live to see them find the answers.

Oh, and Happy birthday!

Mar

But Kathy, that's the key point, I think. She may have vascular disease affecting her heart and renal arteries, but that's not MMD, and they can't find the link to associate the other problems with MM, there's too many factors involved.

Im no medical expert...just simply a MOM.

When Cara was first having problems as a 2 1/2 year old...she was walking like my father whenever he had a stroke...so my mom said I think Cara had a stroke..very small one....MRI showed nothing....but they after five days of negative testing of ALL SORTS of possiblities...was simply very high blood pressure and extra artery in one of her kidneys....plus a list of possible disorders...MM wasn't one of them 'yet'...but a possiblity ...yet they said its just simply "too rare" for it to be a possiblity.   While all my kids were adopted (Cara being from Guatemala and my three boys from California while we were living there)..."rarity" occurs in my family. 

I will always wonder if "one thing is what triggers the other"....there is always a possiblity while there is no written connection...some day it may happen.

While researching for a problem for my downhill problem few years ago...everything I research on the MS site (this was before google was fabulous or high speed was available).....nothing mention "B12 defiency" or pernicious anemia....the damage it does is very similiar to MS....so I saw all my symptoms to MS (couldn't have an MRI yet)...but something wasn't right.    The second the lady doctor pondered...."I wonder if you have a B12 defiency"   ....  I said are you kidding me...its what my dad has but he never experienced what s happening to me.....I couldnt wait to research B12 defiency (when red blood cells lack oxgyen...lack of oxygen goes through your body, brain especially)...yes I was losing function to farious of my body parts....until they realized it was it.

So when I researched B12....oh man oh...it kept saying similiar to MS...here and there.   then I went back to MS to see if I could find B12 defiency anywhere....I finally found one tiny piece of connection ...while no connection...gets mistaken for one or another at one point.   

So I get the feeling as time goes on...some connections will be found....especially with all the talk about "locating of the cancer gene"....so forth.....they'll find the "MM gene" someday...attack it before it does its toll on those we love.....until then we have each other.

tightest hugs,  CarasMOM