Hello all! I am happy to have found this informative group and I am loving all the great posts and points of view here.
My story as briefly as possible. I am a 43 year old from Florida who has had random health issues since the birth of my second child 21 years ago. It started with slow digestion, strange sensations in my arms, headaches and back pain. My symptoms (I will post them all later in another thread) lead me to try to get to the bottom of my back pain and urinary issues. My MRI a year and a half ago showed many things but the syrinx in my spine had grown in a year from 3.7 to 6.8 cm. And now there was a note of a 3-4 mm ectopic tonsils. So i am at the point of trying to get help.
The problem is that I’ve hurt so long and I look healthy that the last neurosurgeon said to come back when I felt I just couldn’t function anymore and we might talk surgery? He kept remarking on how great it was that I was trying to be active and wouldn’t listen to how hard it was to walk more than 5 minutes without my right leg going numb. But I look great he said. What does that even mean?
Apart from that I love travel, writing, photography and all things curried. Well most things curry.
Thank you for allowing me to join even though I’m not yet diagnosed.