I was hoping One or two of you may come under the care of the “ms team” at Frimley. They cover a huge area so i may be lucky.
Just want some tips on getting hold of the Ms Nurse, i have failed for over a year to get hold of them. I gave up and waited for my neuro app to ask him to get me in contact. Which he did and i now have to wait over 6 months for the appointment, not impressed considering i can barley leave the house because of my ms.
I know his number and have met him twice, but cant get hold of him. been trying for ages (years now). Just hoping their maybe a diff number, or email to use. But doen’t look like it.
Thanks for the reply, i think Pals will get an email. I may have to move to Reading.
I’m in Reading, ok it’s a 30 min drive but there’s an amazing team at the RBH (I think 3 MS nurses), I arranged a clinic appointment with them the other day and it’s in less than a month, so if you do move, you probably won’t be disappointed with the great support you can get from them. I had an issue at the end of last year and one of the nurses managed to get the neuro to call me. Message me if you need any details etc.
I had the same problem with this particular nurse when I lived in Farnborough an attended Frimley Park. In other words, he wasn’t contactable, and this is inexcusable. The neurologist was really supportive. I gave up and now live in West Sussex. I’ve had MS for 48 years nd still upright (mostly! I still have bad times and need support and would love to vent to someone apart from my poor husband. I’m going to have an appointment with th neurology department in Chichester so I’m hoping for more support down here.
Reading about the RBH ms team 3 nurses and weekly clinics, amazing compared to 2.5 years left on my own to get worse and worse. The only prob with moving to reading is that the neuro i see is great.
Thanks again for all the replys! And Lilo best of luck in Chichester, maybe we should write reviews on the hospitols we attend.
Since I last posted I’ve been gribbly, with new symptoms (ah yes MS is a feast of delights) saw a new GP down here, am still waiting for an appointment with Chichester neurologist. Yes sure I’d be happy to write about my experience.
Best of luck with anyone trying to find the right place for help.
New GP gave me amytriptilene. I took one 10mg woke up thought I was going insane, flashing lights, nausea, could hardly move, rang th pharmacist who said STOP! So I did. So I’m back to square one minus a few squares because I think I’m now experiencing the dreaded MS Hug. Was there ever such a cosy word that is in reality a hellishly painful crush?
I’ll be back and try and catch up with postings because I think this is a really helpful forum.