hi I am now 27 years old, I have ben in daily pain since i was 12 years old, when I started vomiting from daily headaches they MIR SCANED me, I was dignosised with a heomangioblastoma deep in my head, deemed to be unremovable.
It was monitered every 6 months through scans, I was put on tons of different drugs none of which really did everything, and after i got to 19 years old new and much worse symtoms started to appear.
numbness in my fingers and face, vomiting not sleeping more than 4 hours a day, so the hospital gave me a injetion straight into the head, to frezze the pain, but not only did it not work i lost feeling and strengh in my legs.
I stopped taking any drugs for 3 years and had a baby, then after my daughter was born, I went really down hill, my fingers on the left hand are really numb and my face on the left side twitches and is sloping.
My doctors since moving have been unable to get an appointment the hospitals are full till april, but my french friend got me an appointment in a specailist hospital, where after a full MIR scan there panel was confused to see that the english doctors had diagnosed it as hemangioblastma not astrocytoma as they said that all the symtoms point to this.
I know in myself that the symtoms are getting worse, but noone in englnd Ive seen has done much to help.
I am in pain from morning to night confusion loss of memory and numb hands sloping face and slurrin words on bad day???? surely there is somthing doctors in england could do ???? also if it was badly diagnossed who or what could i do.