Just thought I’d share my story, it is eventually positive
I was diagnosed with MS nearly three months ago. I was not given an MS nurse. I was not given a letter of dx. I was basically told I had MS and shown the door. Not even a leaflet.
World crashing around me and nowhere to turn.
After several emails to the neurologist I was given my MS nurses name, I waited patiently and still no call from the nurse and no letter.
I was finally given the nurses number 2 weeks ago. I suddenly found I could not make the call though, This Monday, I bit the bullet and called, immediately I broke down in tears as the kind lady took my details. The neurologist had not informed the MS nurse of me as a new patient which is normal protocol, then she told me she contacts the patient within two or three weeks of dx. My neurologist has been absolutely crap.
The MS nurse who I spoke to on Monday came to see me today, suddenly I have support and its such a relief! She is referring me for physio, bladder and bowel specialists etc. She is sorting me a prescription with the GP to help with my current onset of symptoms. That was all today! She has advised me on benefits I can get (bus, rail etc), advised me on groups etc.
I am really pleased. We talked through everything from toilet habits to walking the dog. Some of it was very difficult conversation subjects, such a burden taken off and shared. I have direction at last.
Feeling gooood…even though physically and emotionally drained