Hi I wanna to talk whit someone and maybe meet if living locally to me (I live in London Enfield Town), get advise what to do and what I suppose to do and maybe someone gets infusion Alemtuzumab like me.
ask if you can put a leaflet up at the place you get your infusion. ANYONE IN THE LONDON ENFIELD AREA WHO IS INTERESTED IN MEETING UP CONTACT GREG ON xxxxxxxxx most people with ms enjoy meeting others with the same.
I’ve had the Alemtuzumab if you want to ask me anything?
I live in Cardiff so no where near London, but you can drop me a message
Hi Greg, I’m 15 months post R2 of Lemtrada. It’s been a positive experience for me so far (no issues with the treatment, no MS relapses or new lesions on my latest MRI) although relatively early days yet when it comes to assessing longer term impact (both on MS and secondary autoimmune conditions I have may as a result). I’m very happy to answer any questions - and have posted a few threads on this board detailing my experience which should pop up under the search function. I’m also a Londoner (sort of). I live (just) in the South East corner of Greater London (near Orpington) - and commute into work Mon - Fri as I work in the City (I’m based next to the Gherkin - so Liverpool St way). Very happy to meet for a coffee if you are down this way. Alternatively, I’m going to be in Letchworth on 8 December if you fancy a short drive up the A1? The MS Trust are “taking over” Letchworth parkrun and so there will be a number of parkrunners with MS heading up to support the MS Trust. I’ve posted a separate thread on this if you are interested - https://community.mssociety.org.uk/forums/everyday-living/ms-trust-takeover-parkrun Kat
Hi Katy I’m fairly local to you (Dartford way!) Do you mind me asking a quick question. I’ve been referred to Kings for Lemtrada, my local hospital has done the prescreen tests but I haven’t yet heard from Kings. Do you recall how far in advance of your treatment that you received a date? I dont really know how much notice I will get to get myself organised! Thanks, Rach x
I did my pre-screening at Kings - and was admitted for Lem within about 4 weeks following that I think. They don’t usually like to leave too big a gap. From memory, I had target dates from my nurse (Gosia) from before the pre-screening but these were only confirmed in writing once the screening results were known (about 2 weeks later I think). It was slightly stressful as I went on holiday between screening and treatment (pulled forward as we’d originally planned an August holiday which would have been straight after treatment. I was only formally diagnosed mid-June and we were caught by surprise how quickly things moved!) so spent the holiday anxiously hoping I’d have a letter waiting for me when I got home!
if it has been more than a 2-3 weeks since your pre- screening I would follow up. Good to be able to plan your life!- and I think Kings are still advising people to start the anti-listeria diet pre-treatment.
Have you met the KCH team yet? I’m under Dr Silber. He is very straight talking which I like. Gosia is wonderful and Monica provides good support when Gosia isn’t about.
No I haven’t had any interaction with KCH at all yet! All of my neuro appointments have so far been at Queen Marys or Darent Valley. Thanks for the that info Katy. I did think that they’d want to get started fairly quickly after pre-screening, but when I said that to my MS nurse on Thursday she said there isnt really a time limit where you’d need to have the prescreen again (should there be a longish wait to get into Kings)…