Last reply 9 months ago
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.

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lucyr
9 months ago

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.


beckyb
9 months ago

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!


stumbler
9 months ago

Hi @beckyb and welcome. Always happy to help a Forum virgin through their first experience. 😉

Dealing with a diagnosis of MS sets you off on a rollercoaster of emotions, almost akin to that of a bereavement. So, just be gently on yourself.

Good advice above from @lucyr . Here’s a link to the MS Trust website and their “ten tonnes” of publications :-

https://support.mstrust.org.uk/shop

These can be read online, or ordered. Your MS Nurse will probably provide some too.

Just stay away from Dr. Google and stick with creditable websites, like the MS Trust (https://www.mstrust.org.uk/)

The steroids that you have been given are a relatively slow fix. They’ll be working with your body over the course of 6 – 8 weeks to help your recovery. Just rest up and allow this recovery to happen.


vixen
9 months ago

Hello @beckyb, really sorry you’re going through this awful time. I get treated at St Georges and I have to say, from the outset felt really supported by them after my diagnosis last year. To be fair, even if you get assigned a nurse at St Georges their greatest value is in being at the end of a phone line so I guess distance wont matter. I’ve never done social media either and Shift has been a blessing for me.

My advice would be to take all the time you need to process the diagnosis and to not rush into making any quick decisions. And deffo avoid Dr Google. I learnt pretty quickly that stress has a real impact on MS so do everything you need to do so make yourself as secure as possible. If you are working, you are well protected under employment law. Although it’s hard, try not to push yourself to prove you can still do things. Keep as active as you are able, but within limits. At the moment, you need 100 pc focus on recovery and to be really kind to yourself!

I know treatment sounds scary, but these are all options no one in the world had ten or twenty years ago. So in that sense, we are ‘fortunate’. For the first time ever ever ever, there was recent approval in Europe to treat Primary Progressive MS which is literally what MSers around the world have been praying for. Obviously, no cure as yet, but research is pointing in the right direction.

I hope you are starting to feel better. At least having a diagnosis gives you a fixed point to move on from. Stay strong, keep posting and stay lovely xx


beckyb
9 months ago

Thanks everyone I’m finding all the advice really helpful and super supportive.
I had three days of IV steroids before the tablets so do feel miles better, but I’m not going to push it!
Literally having to change my life from now on as I’m usually busy busy busy.. Was a shift worker but no more of that! I’m lucky work have been fantastic and when I eventually go back I’ll have a new role to go into.. Just scary doing a desk job something I never saw myself doing. Strange how life works out.

Glad I’ve found this site and such awesome people to talk to.


merfield
9 months ago

Hi @beckyb, how would any of us have managed without shiftms? It’s the best. I’m a relative oldie to be diagnosed but whatever your age it’s something major to adjust to. As @vixen says we are fortunate to live now, in an age of discovery, research and treatments. Who knows what treatments are round the corner – I’m optimistic. Stay positive…..we’re all here for support 😊Xx


grandma
9 months ago

Hi @beckyb, I was diagnosed 24years ago but so many things fell into place, I.e the clumsy child, being great at netball one day and not being able to catch the ball the next! But Avonex had just come out, as you say there wasn’t much choice, but Mr NICE said yes despite the cost, and I was on it for 23 years. Have just changed to Tecfidera, cos the MS nurses agree that the Avonex wasn’t wotking any more. So there is now a bit more hope, so stay positive, it’s not a life sentence any more there,’s a lot both us and medicine can do. Keep your chin up😍 Jill XX


beckyb
9 months ago

Shift ms has been amazing, im so grateful for the comments and support from you guys. I feel less alone dealing with ms.
It’s funny I gave up netball last year, painful knees and so clumsy! It all makes sense now. Still miss it but maybe I can go back once I’ve had treatment.
I’ve seen all the positive research on here from the experts and it’s a good time to be diagnosed, so much scope with treatments, new discoverys and passionate people everywhere.
I have more drive now to enjoy my life fully and make the most of every minute.


lilbird
9 months ago

Hi @beckyb sorry you have to find yourself here but now that you have it’s a pretty great place to find answers & support & even the occasional giggle 😁 sounds like you’re in a positive frame of mind & have a great medical team at your side so here’s to moving forward 😊


beckyb
9 months ago

Thanks @lilbird it’s been brilliant finding this space within the ms community and I feel so appreciative of all the comments/advice and support. Yes I’m gunna raise a glass to moving forward tonight! 😄


lisaneighbour
9 months ago

Hi

I am fairly new to all of this but have found the forum to be so helpful.
Even if you don’t engage or post, you will find good solid information, advice and lots of different experiences.
I definitely agree with the advice about not making rash decisions. It’s great your company are changing your hours. I am still trying to struggle with shift work. Now finally accepting, that I may have to tweak little things to make life easier.
Take care of yourself and keep posting.
Lisa
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