We discovered last spring that I also have Raynard's syndrome. Now while there are other women with NF2 that seem to have it, mine could also be attributed to genetics as my mother has Raynard's Syndrome too.
What is it? It is a condition where one loses blood circulation in the extremeties (fingers and toes) causing them to become white as if frost bitten. It is normally present in females and the onset generally occurs at age 35 which is the age I was when it first happened to me last year.
I had 3 episodes last spring and the first was quite shocking. I went into the gym and all of a sudden my finger looked dead! I had to warm it vigorously under hot water in the gym bathroom. Then another time it happened while I was grabbing a frozen meal out of the freezer at the grocery store where it took very long for my finger to warm up and return to normal. When it did it went thru a phase of tingling like pins and needles prodding it while it changed color from white to purple and the red.
This morning the trigger seemed to happen after I had been holding a cold bowl of cottage cheese and pineapple I had been eating. I had not noticed it until I finished and went to the sink to rinse the bowl. My finger felt kind of strange and when I looked down it was completely white and stiff. This episode fortunately was short as it quickly returned to normal after vigorously rubbing it under hot water. There was no tingling either.
Weird. I survived many cold days of winter being in the outdoors and it did not happen until today while I was in the warm house. After the surgery I thought maybe I had gotten lucky as I did not have any attacks in the fall of last year or winter this year.
Hopefully it is just what it is and not some strange side effect I am having now from the other tumor. I should have paid attention last year as to which hand it was happening on. This morning it was my left middle finger. On the left side is located the tumor that has not been operated on yet.
Addition:
I forgot to mention that back in February on a visit to the dog park I kept taking my gloves off in order to shoot pictures. Although it was very warm (40s-50s) compared to frigid midwest winters of below zero, my hands still became icy and stiff. When I returned to the truck my right hand was so weak from the cold that no matter how hard I tried, I was unable to have enough strength to turn the key in the ignition far enough to start the vehicle. After repeated unsuccessful tries (4), I had to use both hands to turn the key in order to start the truck.
I was a little worried it was not going to work. What would I do? How strange would it be for me to ask a passing stranger to turn the key in the ignition for me.
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