Last reply 1 year ago
4 months since Lemtrada R1

So tomorrow will be exactly 16 weeks since I walked (hobbled) in to that room and had my first infusion of lem. I was relapsing, walking funny, not at work – and hadn’t been since October! And generally just fed up with bloody ms and what it was doing to my body.
And now:
I haven’t had a relapse since Lemtrada. This means my body has had a break and a chance to try and repair some of the damage! My walking isn’t spot on – but it is so much better, and I have periods in the day where my walking is so good you wouldn’t know there was anything wrong! I’m working part time at the moment but within the next 6 weeks I’m aiming to be back full time which I’m so excited about!

One thing that was really causing me issues was my back pain. It was incredibly painful and it would force me to stand funny, walk dodgy and in the end sit down! So I did something and I went to a chiropractor. Tom x-rayed me and located all the areas in my back that were all wrong and there was quite a lot! But he assured me he could help and did some adjustments, the next day I felt brand new!! Naturally, my spine and pelvis will try to go back to how they were but I’ve got a 12 week program sorted and by the end of it, I should be back to normal. I highly recommend visiting a chiro if you have back problems and it’s an option for you.

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1 year ago

Congratulations gatesy lass Iv got the go for lemtrada just need to make my mind up when and where. There’s no bloody waiting list but I’m gonna get as fit as I can before I have it give myself a bit more of a shot and healing quicker after. What is the diet plan like after lemtrada?

1 year ago

Thanks @doubleo7hud! I feel like I am celebrating the 4 month mile stone appropriately by doing my first full day at work work since god knows when!
Ahh excellent, the lem will probably wipe you out regardless of how fit and healthy you are but good for you!

The diet is ok, but it does take time to adjust to, if you like beans on toast you’ll be ok!! you have to constantly be aware of cross contamination – anti bac will become your best friend! And hand sanitizer! I would suggest buying a probe thermometer if you don’t already have one, all food must be served above 70 degrees I think it was, a lot of foods you are not allowed but they’ll give you all of that info! Make sure you keep us updated! And good luck! Xx

1 year ago

@gates1989 i am hoping for either Lem or Tech just wondered is this your first DMD and did it improve your ma symptoms…i have fatigie numbness and heavy legs. Also how long is the post treatment diet for?

1 year ago

70 degrees shit the bed can you let it cool down before you eat it? I don’t fancy kicking the bucket by eating molten beans on toast it’s a bit of a shite way to go 😂

1 year ago

Hi @anxious123 no, i was first put on copaxone, then Tysabri, then Gilenya and now lem, it’s only been 4 months but I certainly do feel better since December! I was quite unwell so it’ll probably take a while for the damage to be repaired!

@doubleo7hud .. I think it might just be meats lol not sure they’ll tell you everything! X

1 year ago

Wow @gates1989 well done, I’m so happy to hear that. I am 10 1/2 weeks post Lemtrada treatment, first round also. I have only had maybe one or two days in those weeks post treatment that I have felt somewhat normal. I wouldn’t dream or even think about returning back to work yet, I know within myself that it’s not possible. My mobility still isn’t great, my head feels like it’s intoxicated, and my cognition is not shop at all. I’m glad to hear that you are doing better getting back to work and feeling good.

I probably worked up until my treatment, but looking back on it now I’m surprised I managed, my mobility was becoming affected, I had this feeling of intoxication before my treatment, and I think I have dropfoot in my left foot, but not officially recognised or diagnosed by My consultant neurologist as it’s been so long since I’ve seen him. My next appointment with my neurologist is in August, and my next appointment with my MS nurse is in July. I would’ve thought that after such a hard hitting medication the appointment would have been sooner, but heyho!!
I know it’s different for everybody but at what point did you start feeling yourself again and start feeling better?

I hope the positive feelings continue for you, and work works out good for you, just don’t push yourself X

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