Last reply 2 weeks ago
M.S Nurse

Today i met my M.S. nurse for the first time – cant even begin to describe how much better i feel after meeting her. She really understands this disease and answered all my questions and explained my scans and spoke at length about the treatment i am due to start in october (Lemtrada). What i found most interesting was she told me that most people have M.S at least 5 years before a diagnosis and we went over my health over last 10 years and realised i had symptoms of M.S. going back at least that far. I was actually diagnosed with M.E 12 years ago and was quite bad for about 6 years then improved for a few years before i had a bad bout of vertigo last year which led to my first mri scan and a diagnosis in may this year. I realised then that i have probably had M.S. for 12 years – bit of a shocker really.

She also discussed my pain and fatigue with me and is contacting my doctor to arrange medication for me to start – it was so lovely to speak to somebody with such knowledge and im so pleased that now i feel i have somebody that i can contact who will understand what im trying to explain. Over all a good day x x

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vixen
2 weeks ago

Hello @linzzzi, I agree, MS nurses. Play an amazing role in our lives. I’m so shocked though that not everyone can access this service, it’s a postcode lottery. I’m at the stage now, after 18 months, that just knowing she is there if I need her means I don’t actually need her, do you know what I mean? 🙂


stumbler
2 weeks ago

@linzzzi , a good experience like that is so comforting.

MS Nurses do know their stuff as they only deal with MS cases, so can become more specialised than some Neuros!

So, thank you for sharing your experience with us all. 😉


grandma
2 weeks ago

Totally agree, my ms nurse is brilliant, I see her every 3 months but they have an office and a secretary, so I can call anytime, obviously she works 9-5 but I just leave a message and she calls back. I’m lucky, had have the same one for 15 years, in fact when she took Maternity leave and was missing for a while, never forget to ask about her daughter who is now 13! Doesn’t time fly when you’re having fun😍

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