Hello everyone, this is my first post on this lovely community. I’ve found it really helpful following along with everyone else’s experiences, so now here is mine:
I was diagnosed in June of this year after struggling with symptoms for around 8 months. In October last year I remember walking 40 minutes to meet my girlfriend for dinner, and the next morning my legs felt like I’d run a marathon. I was a keen runner at the time and assumed the pain would pass in the next day or two. Days turned into weeks, weeks turned into months and still I couldn’t run. Even walking for more than 30 minutes was a bit of a struggle.
Eventually after a few visits to GPs (of varying quality) I managed to get an MRI scan and the results showed the telltale lesions on my spine and brain. Coincidentally, the day after I got those results back my mobility plummeted even further with what I now realise was an acute flare-up, and I could now barely walk at all. We went to A+E to get me a steroid injection and they recommended I stay on the ward for a few days so they could monitor me and give me a couple more dose of steroids.
Later that week I got discharged, given a diagnosis of RRMS, was shown my treatment options and finally last week got started on my first dose of Tysabri. I’ve had no side effects so far and I’m just glad to be making progress on my journey after quite a months of not really understanding what was going on. My girlfriend has been brilliant with it all, and close friends and family have also helped me not feel alone. Anyway, thanks for reading if you’ve made it this far!
Hi Frankie
Like you my symptoms drastically worsened at the time I was given my diagnosis but that also coincided with a spell of hot weather.
I had an appointment with my consultant on Monday this week and explained this, he said it was more than likely the hot weather that caused the problems.
( there is a name for this phenomenon that escapes me at the minute )
I am having difficulty walking now as my legs tire after 10 minutes of walking or standing now and sound similar to how yours were.
My question is whether the steroid treatment helped or are you still struggling.
There was no mention of steroids for me.
Regards
Dave
Hi Dave
Ah, that’s interesting! I can’t remember exactly but it was June, so it’s fairly likely there was warm weather involved.
So the steroid treatment I had was a one-off short-term fix, as I was newly diagnosed and it was likely that I wouldn’t get on any long-term treatment for a few weeks/months. I called up 111 and eventually found out I could go to A+E, tell them I was having an acute flare-up due to MS and that they could give me the steroid infusion there and then. As I was receiving that they offered to find me a bed on the ward for the next few days to receive a couple more infusions which I was happy to do. By the end of the week, my condition was back to how it was before the flare-up: ie. I still had mobility issues but I could now walk for 30mins or so, rather than under 5mins.
Are you on a long-term treatment at the moment? If you are not, I’d say trying for the steroid infusion is a good idea if you have another flare-up and your condition plummets rapidly.
Hope this helps!
Frankie
I am sorry about your dx and glad that you have started Tysabri. It has kept my highly active RRMS quiet for many years and has been a wonder drug for me. I hope that you find the same.
Hi Frankie
I am not on long term treatment yet. I’m hoping to be in the next month or so if possible. I still need a lumbar puncture to make my diagnosis official first although my neurologist says there isn’t really any doubt. I was in hospital last week ( A+E )with extreme weakness, I could barely stand up. I explained my situation in full to the Dr there but there was no mention of any treatment options to me.
Tanks for the reply.
All the best
Dave
Welcome!!!
Myself too has RRMS - I was diagnosed Nov 2023 at 29 yrs old - I was very lost and confused at first but with help from my partner, family, friends i am way more confident person than I ever was!
This forum is a great way to speak to people who experience what we have to deal with day in and out.
I started Cladribine (tablet) in April 2024, My nurse warned me my immune system will be rock bottom for a few months.
Its been… difficult. From July I had this sudden breathless/wheezy cough. They admitted me into hospital. After a lung function I was diagnosed with Asthma (Although the inhalers are not working) They are looking into this. I’ve never had asthma as a child. Never had chest infections/cough before I don’t smoke. Just seems pretty random to happen after I started treatment?
But other than that I feel great, I have regular blood monitoring tests just to check if everything is okay.
But staying positive is the best way to go. We all have our good days and bad days of course.
Hi
Can I ask how your finding the Tysabri so far ?
Got my nuro appointment in 2 weeks and Tysabri might be one of my options so looking for peoples experiences
Thanks
Can I ask did your GP give you a formal diagnosis? As I have to go to the hospital to see a neurologist even though I’ve already had the MRI and all the signs are there.
Hi Dave
I had the same symptoms as you, and couldn’t walk, I ended up in A+E and I got a MRI scan then a few weeks ago I got told I have MS. I was out of work for 8 weeks, then the second time I was off work for 6 weeks, I hope you can get to the bottom of it all.
Hi
Thanks for your reply.
I have seen my neurologist who has recommended either Kesimpta which I originally asked for but suggested Mavenclad may be a better option.
I am still awaiting the results from my second MRI ( 6 month gap )
Hopefully there wont be any more bad news.
I then need further blood tests prior to starting my DMT.
This MS is a rollercoaster ride. Yesterday I felt terrible and was getting a little concerned and today I dont feel too bad at all apart from minor issues which are to be expected now I guess.
I hope youre feeling as well as it is possible to feel at the moment.
Good luck with everything. It can be a long journey as I have found out for myself.
All the best
Dave
Hi, I really wish you well for your MRI scan, stay positive,and yes this MS is a rollercoaster,and scary. I have another MRI scan on Saturday,they had a cancellation and I guess I will be starting my tablets in the new year. It’s all confusing,but it’s going to be a new year soon so it might be all good I wish you well for your results when you have your MRI.
Thanks. I’ve got my fingers crossed for some positive news. It would be nice to start a new year with something good. This year has been terrible.
Hopefully the tablets wont have any ide effects and will work good for both of us once we. get started.
Good luck with your MRI and I wish you all the best possible outcome for the future.
Have a great 2025 and try and stay positive whatever it throws at you.
Dave
Hi Dave
Thanks for your kind words,and I wish everything goes well for you also. We all just have to stay positive and look forward to a new year and new beginnings,and not let this horrible MS get the better of us. Have a good 2025.
I wish you well for your results when you have your MRI.