I am so very sorry for all you had to go through.  You will be more fuel to my fire.  I often wonder if this is a rare disease because it is or because it is not being diagnosed.  I wonder just how many people have this, how many children have died and they have lumped it under some other catagory.  Food for thought.
Take care, a bless you.
Tammy

Sandy, That has been what has gotten me through all our ups and downs."od will not give us more than we can bare" It got me through Kahtleen's diagnosis of Down Syndrome,I have to tell you though I did question it just for a moment,thinking wow could god have made a mistake here,I cna't raise a child with a dissability.Well he didn't make a mistake she is the most inspirational person in my life.She has made me who I am.then of course it was tested again when we got the diagnosis of MM.I too wonder just how rare it really is and how many adults anad children have never been diagnosed.I guess it's kind of up to us to educate people.I ahve talked to many people in my Down Syndrome support group and not to make them afraid but educate them to the fact that if they see regression in strength or capabilties of theri child don't just chalk it up to the Down syndrome.It can very easily be seen as just a regression in muscle tone.From what I have read children with Down Syndroem have a higher rate of having MM. Many of these childen aren't verbal enough when they are young to talk about things like "numbness" headache or even feeling weak. One day at preschool the teacher said Kathleen  was very tired,she had layed her head down on the carpet durring circle time and didn't come back up she was "asleep".I think now it was a stroke.she had been sick but never was that tired before. I feel the pain you both must have after being treated like you have by Dr.'s .this should never happen to a parent and child.These Dr.'s are working for us!!! They are being paid to do a job and that is to take every complaint seriousely and work with it until they find the reason.Not to JUDGE us as parents. Tammy and SAndy you are both amazingly strong women and I feeel privledged to know you.
Mary Grace