Hi, this is my first post on here but I’ve been in limbo land for the last 5 years. It all started with a really bad strange headache and numbness all down my left hand side. I was very unwell and had to stop working. MRI revealed lesions but lumbar puncture was negative. The registrars report stated ‘likely MS’. The MRI’s were repeated a year later but showed no change.
I was discharged but have ongoing symptoms; Face and scalp pain, tingling feet, back pain, visual disturbances, muscle cramps, fatigue and the weird headache returned recently. This led me to ask the GP to refer me for another MRI. This one revealed new lesions on the other side (left). I also have numbness in my right hand now as well as the other ongoing symptoms.
My GP gave me the radiologists results and it stated demyelination. GP referred me back to neurology as urgent but my neurologist downgraded my referal to routine. I can’t understand why, after 5 years of symptoms and changes to lesions on MRI scans my neurologist is still not taking my symptoms seriously. Goodness knows when I’ll be seen at neurology as I still don’t have an appointment date.
Is this usual? I should add that I asked to change my neurologist 5 years ago as the first one was so dismissive and almost sneered at me saying ‘you definitely don’t have ms if that’s what you’re worried about’. What with the registrars comments and the dismissive attitude by the neurologist I feel quite badly treated.