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Wilson101
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I Love MM.com!

Posts: 1
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Jun 20th, 2017 at 10:25am
 
Hello all, what a great resource this is!!

Well my Moyamoya journey started about a week and a half ago. I went into the ER last Thursday for a really bad headache that wouldn’t go away (Over 24 hours) and they gave me meds and such that didn’t really help. Did a CT scan, then a CT angio and finally an MRI. After 13 hours in the ER I was diagnosed with what was presumed as MoyaMoya Disease (Holy crap this sounds weird and scary). I was release and told to follow up with UofM the next day.
The next day we attempted to follow up but it was much more involved then that but after a long day of hard work Mindy (My Wife) was able to get me in touch with the right Dr. (Dr. Thompson) and we were able to get some info. The gist was yes it looks like MoyaMoya but you are generally healthy so stay very hydrated and we will follow up next week.
Saturday we were on our way to race in Delta, Oh (Kids race MotoX) and I started feeling off and decided to go to UofM ER instead. This kicked off a bit of a whirlwind and landed me in the stroke unit for a 4 day stay for test and observation (No Stroke).
Monday late afternoon I had an angiograph done and confirmed MoyaMoya Disease with only partially restricted blood flow on the left and good flow on the right. After some more recovery and observation overnight I was released Tuesday and back to work Wednesday.

Fortunately I have never had a stroke and only partially restricted flow on the left side. They say is has been there since childhood and it does explain some things from years past. Wrestled as a kid but stopped due to headaches and always hated working "on my head" as being bent over and working would give me a slight head ache. Hangovers always came with horrible headaches as well (scary to think how dangerous that was now).

So at this point I have only had a few short conversations with Dr. Thompson at UofM though he does seem knowledgeable about Moyamoya and has a great bedside manner. My first real appointment with him is in two months, seems forever away but they say with the good blood flow I have and being in good health I am not facing any urgent needs right now. They did say to come straight to the ER if I present any signs even if they are very slight of a possible stroke. But generally in good health so stay hydrated and be very aware of that.

Thank you all for sharing so much, it has been some very informative reading. It also shows me just how fortunate I am and that there are some very strong and hard fighters around here.

Thanks again,
Jason Wilson
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