MS nurse finally!!

Just thought I’d share my story, it is eventually positive :slight_smile:

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 :slight_smile:

Shocking treatment to leave you like that after Dx, you must have been very scared. MS nurses are angels in disguise, mine has helped my so much, I was put on her list before I had official Dx as my Neurologist was so sure that I had MS. This was great as I was able to build a relationship with her, I am totally as ease with her and feel I can discuss any worries with her however embarrassing! So pleased that you are at last getting support, what a shame it took so long. I was officially Dx with RRMS June 14. My Neurologist and his secretary couldn’t be more helpful, so there are some good ones out there! Have you got any options to change? Very best of luck Sarah x

Hey zombie, glad you’re finally getting what you need. Andy

I am making an appointment at the doctors Monday to specifically ask for a change in neuro.

I’ve been emotional since I made that phone call, its such a relief to have someone to give support. I felt totally at ease with my wonderful MS nurse. She gave me a big hug when she left and said ‘I’m always here if you need me’. Angel in disguise indeed (even if it did make me cry).

Hope you are all well :slight_smile: