PLEASE READ THE NEW ARTICLE AT THE TOP OF MY BLOG PAGE!
I have finally found an article that in my judgement, explains this disease. I have CCM2-10 deletion. Anyone with this exact code of the disease are part of my family line. It’s amazing for me to have been told this, because I got a call from California from someone who has this same genetic code. This means someone so far away is part of my family line. Wow!
I’m not sure of what I have written in my blogs because my short-term memory is so bad at this time. I also have the very rare, recently found a CCM on the retina of my eye. It was found on the backside of my eyeball, which may explain why I have headaches that start on one side or pain in my eye. My husband and I went to see a movie recently and we sat in our usual spot that we like, on the first row of the upper seats. It is very close to the screen, but not on the floor. Afterwards my eye hurt for hours. I had to come home and keep my eyes closed in the dark as well as take pain meds. The next movie we went to we sat almost on the very top row and I was ok. Yay, because I love our dates to the movies!
I can now add this to the list of where my CCM’s are located and the deficits they cause in my life. I’m not being a whiney baby, I’m just one of a very rare condition of the disease. I also some years back, started noticing CCM’s on the surface of my body. At the time I thought they were just purple-red beauty spots. LOL Alas, they are not.
I am now trying to find a Neurologist in Louisiana who knows something about this disease. I am at my wit’s end trying to find one, even in surrounding states. If anyones knows of one, please let me know.
P.S. Don’t you love spell check! I do!