Please help and some advice

General
1

Good Morning everyone,

I need some help, I went to my GP last week to report that my dizzy spells and pain have been getting worse. I have 3 MRI's coming up next week. I started to talk to him about neurosurgeons and that I wanted to see a certain doctor at a certain hospital. He proceed to tell me that I'm over reacting about most people with CM 1 never see a neurosurgeon and never need surgery. Since I fell and this all was discovered on CT scan, I'm so dizzy at times I can stand, my hands and feet go completely numb. I had symptoms well before this and for many years. My doctor and I just put it down to other things like, Osteoarthritis, cluster headaches etc. My knee surgeon now beleives that all the muscle weakness and instablity issues are from the CM...8 knee surgeries later...

I dont know what to do...

My next question is, how many of your work fulltime. My job at time can be physically demanding. I work for a PVC roofing membrane manufacturer, at times I have been required to go and inspect roof installation etc. I have been passing them off to other people since my Dx. but I am not having trouble driving and even desk work exhausts me. What does everyone else do?

Thank you so much

Amanda aka Roofermom

2

I was diagnosed six yrs ago in London…and told by my consultant at the time CM1 was nothing to worry about, I now was with crutches, I’ve had to put my cake business on hold as the pain and the many different symptoms I have leave me unable to function. I think its great you can still work, however be careful of the type of things you do. I can’t walk on a level floor without a little trip. Lool but that’s just me. Even though I’ve been diagnosed, doctor’s still know so little that I always seem to find myself pushing for my care in one way or another. Wishing you all the best.