Newly diagnosed
I've never written on a forum ever, but change needs to be embraced sometimes. Including the news that I wasn't completely loosing my marbles, I do have MS and I am willing to deal with it in quiet a few ways. All with as much of a positive approach as I can muster and banter ( if I can't laugh I'll cry!)
So after 6 days in hospital on steroids I now have lots more of them to take at home, but at least I'm in my own bed! Apparently the neurologists having a meeting at st George's London about me and decide what sort of treatments to recommend. Then I need to wait for contact from my MS nurse... I'm so impatient I want to know who I can contact all the time instead of calling the neurologists every five minutes! 😂
They say my MRI shows I must have had MS a while and it's super active. I was shown the lesions and my brain just looked like Casper the ghost was inside. 😂 Inflammation everywhere spinal cord and brain.
They want me to have aggressive treatment at st George's ... Can anyone enlighten me a touch when, how long, what will it involve? I have sooooooo many questions.
Did you see Dr Camilla Blain at St George’s? I saw her and I believe she’s pretty ace. My MS does not seem to be the super active type so I’m sorry to read that yours has been so very mischievous. Which part(s) of your body have been affected at the moment? Scary isn’t it? You’re not alone in feeling that way. If you go on the MS Trust website, they have ten tonne of publications they can send. There’s a really good one that explains all the disease modifying drugs. It sounds like they want to give you the infusion (lemtrada?). My understanding is that it is indeed a hardcore medication but I believe it’s supposed to be effective. Have a read. Use MS Trust website as it’s much less scary than MS Society. I think I might live locally to you...I’m in Farnham and work in Guildford. I know there’s an MS Nurse working from Farnham Hospital and she’s really lovely. I use her as my first port of call. I hope some of this info helps and I hope your relapse starts to improve soon. Do get in touch.
Thank you for responding! I live in Bordon but I'm a Guildford girl, and ended up at the Royal Surrey! So much easier for my parents and friends to visit. I've only been in Hampshire a few years and work in Guildford too. I saw several neurologists the ms specialist Dr Rashid and also Dr Warner, they were particularly conserned about in particular lesion where my antibodys have fused to my T cells.. I think it's something to do with the fact I have no protection against any infections or viruses. They spoke about a meeting they have about patients and how they will inform my ms nurse .. But they don't know who that is yet! I'm praying I can have the Surrey nurse as she'll only be up the road. I've been quite unwell but thought it couldn't be serious as none of the GPs were that bothered about my weird symptoms, and I didn't chase them up until I couldn't walk properly anymore numbness tingling, then it moved up my legs to my abdomen and two of my fingers. October I had a numb tingling tongue that went away by January, and the incontience they gave me antibiotics and told me I had a uti.. Which the neurologist doesn't believe it was. Constant colds since September and now I've read about the first thing I noticed out on a run in September... Like a jolt of lightening when I bend my head down into my chest.. But I couldn't pretend anymore at work that I was fine.. these last four weeks all the fatigue. they could see I was a state and I went back to the doctors they sent me straight to RSCH. I will definitely have a read up of your suggestions. Thank you. I like to know all the information then I can rest a bit easier!