"Problems during treatment of multiple sclerosis "
Posted by Lynnie (as ),
Mine is a story where all my MRI notes were destroyed and I have a letter as evidence of this being done a few months after my scan. Diagnosed with secondary progressive MS to be told by my MS nurse that I know more about MS than everyone else does in neurology.
I had to wait 6 hours for my ambulance from the last appointment. After bladder botox was given to me at the time, I understand it was not clinically trialled, yet still given to me. I nearly died 2 weeks after with complications. Emergency medics fitted me with a male catheter as they said they had run out of female ones.
We had to move property 2 weeks after that and pay a mortgage and rent on a bungalow for 2 years until our home was sold. No counselling was given to me at all for over a year. During the first year of diagnosis that should have been done as soon as possible. No walking sticks or wheelchair either for over a year also. The list is endless.
During NHS change day I was telephoned at home to be told do not post anything about CCSVI (chronic cerebrospinal venous insufficiency) because none of us know what it is or understands it and if you do we will delete it. MS Society UK banned me on one of their websites for speaking out also .