I feel I am the most angry MS person right now, and would like your views.
Was dx 2009 as RRMS, and given amitryptaline and pregabaline for nerve pain. Had a couple of appointments with neuro over the years, had at least two steroid phases to treat symptoms, the last being March 2012. March 2013, I requested to see neuro again as symptoms over 12 months had got worse. It was then I was told I am now SPMS and told to go away and keep doing exercises from the physio. Oh and sent a wheelchair to help.
Have progressively got worse (mobility-wise) and this week saw neuro again (on my urgent request) who told me there is no medication I can be given (drug trials ongoing - not releasing to the market yet AND were expensive)! With a final, go away and keep doing your exercises!!!
I feel very abandoned and thnk had I been prescribed some form of meds from the start, then I wouldn’t be in this state right now - maybe a year down the line?!
I have RRMS friends who are all on meds - my neuro even personally delivering meds to their home!!!
Do I kick up a fuss or is that it for me?
Would appreciate your feedback.