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Hello - new to the forum and quite new to MS

Hello,

I’ve not used any sort of forum before, so a little nervous about posting in here, but hopefully (after reading so many useful threads) there will be a little advice.

I was diagnosed with MS in Dec 2017 after a few months steady decline in walking, gripping and my eyesight. I had put off going to the doctors for so long that by the time I did, my GP immediately advised me to go to A&E and I was admitted more or less straight away. I received a week of excellent care from everyone, with MRIs, a lumber puncture and Neurologist visits, which meant my diagnosis came around quite quickly and I’m very appreciative of the instant tests I received. I know a lot of people have to wait a long time for these, and even longer for a diagnosis.

After a couple of months of steroids I was more or less back to normal physical health, and did all I could to avoid thinking about MS. Around August/September of last year that came crashing down and I suffered with anxiety and constantly felt depressed, I took time off work and saw my doctor who put me in touch with a councillor who was really helpful, though all too brief. I also had a relapse in that time which is much less severe, but MRIs have concluded there are more lesions. After a disappointing hospital trip in December last year and another just last week, I’m starting to struggle a little more. I wondered if anyone had any advice on coping with the uncertainties, and the fear of the burden placed on those around you (e.g. my boyfriend and sister who I live with who give excellent support)? I constantly feel guilty in case I complain of pain or tiredness too much, and worry about the future my boyfriend is letting himself in for!

I am (lucky to be in a way I guess!) eligible for the infusions based on the relapse and new lesions, and after lots of research decided to go for Ocrevus, which has a 6-8 month waiting list. As grateful as I am for the availability of the treatment, I was hopeful to remain on Capaxzone as it doesn’t affect the possibility of having children. With Ocrevus, taking the waiting time into account our plans have been pushed back most likely by just a couple of years (I know that’s a small price to pay!), and I wonder if anyone else has been in a similar situation? I am keen to escalate my treatment after strong recommendation from my Neurologist, I know I’d always want to know I’ve done all I can to make later life a bit better. However I’m struggling with the concept of life being on hold, and have (as with everything online) read some horror stories about the infusions, so after a little reassurance if anyone has had Ocrevus treatment?

I hope anyone reading is keeping well, and thank you for reading through my sob story!

E x

Hey, just wanted to say hi really. I can’t offer any advise on the Ocrevus treatment that you have opted for. I am currently on Gilenya which seemed to be working ok until I had a relapse a few weeks back. I can totally empathise with you about the life being on hold thing, and worrying about the impact your condition has on those around you. What can I say…it’s not your job to worry about that! You should just concentrate on looking after yourself, and it sounds like you have the right attitude. I have had MS for 19 years now and like you have tried to do everything possible to help myself. The minute I was diagnosed, I decided to get fit, and signed up for a marathon! All of the current research seems to indicate that being fit and exercising really does help. Back in the day they used to tell you to rest because of the fatigue. But if possible push through it get active. I opted to take Rebif which at the time was new, and I had to inject it. But it seems to have slowed down progess massively. Since diagnosis I have had 2 children, one when I was 37 and one when I was 39, and it’s the best thing I’ve ever done. So there’s no rush on that front! I’ve recently quit alcohol to see if that helps with the brain fog. (It hasn’t but I feel better for it anyway!) Also…don’t panic. There are so many new drugs being discovered that can prevent relapses. Like I say, 19 years in and I still don’t need a stick, I work 4 days a week, I walk my dog twice a day and I can kick a ball with my boys. I feel like I’m just jabbering on about myself…but I just want you to know that there are some not so bad stories. The hidden symptoms CAN be hard, and I totally get your point about feeling a bit flakey complaining to partners, but hey, you’ve got to moan to someone! As for the depression, it goes hand in hand with MS. I read a really good book called The Depths that kind of explains depression from a natural selection point of view. It describes everybody as having high moods and low moods, and that depression is not necessarily a bad thing, but a response to your situation. You find out you have MS, your mood lowers whilst you mentally assess the situation and take stock. I’ve massively over simplified it, but honestly, it’s definitely worth a read. Anyway, take care and let me know how the Ocrevus goes xx

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Hi, I can’t offer any advice on drugs as I don’t have the type of MS that has any treatment. I just wanted to say Welcome to the Forum and if you have any more questions you are sure to get a response. Or you can simply drop in for a chat. Regards, Anthony

Hi Liz,

Thank you so much for your reply. I had been so nervous to write on here and I am taken aback by the kindness shown from a complete stranger.

I’m sorry to hear of your recent relapse, and hope you’re feeling a little better since last week. That was the first time I’d heard of Gilenya, will you have to change medication now you’ve had a relapse?

Hearing your story, which as you say has lots of positives (along with many hidden, negative symptoms I’m sure) was really helpful. It’s good to know that I’m not on my own in feeling daunted about the future, and there’s hope for a relatively normal life. At 28 you’ve reassured me there will hopefully be time to do all I want to, I just need to focus on a first round of Ocrevus and have a positive mindset, there’s plenty of time (I hope!).

I, like you, have focused on getting fit and am trying to keep it up, though the tiredness and the ‘heavy’ legs feeling sometimes makes it difficult. It’s reassuring to hear this has worked to an extent for you though - motivation to keep going to the gym! My sister and I ran two half marathons last year which was something I’d never pushed myself to do before.

Thank you for the book recommendation - I’m a book lover so will be sure to read it.

I will post again after my first round of treatment, and must make sure I keep up my daily injections in the meantime (easier said than done some days!) thank you again for a little bit of light in tough few days.

E x

P.S - you mention giving up alcohol (well done!) which I am keen to do, not sure I quite have the will power for it yet though!

Giving up alcohol has been pretty easy tbh, but it’s easier with kids I think! I never drank whilst they were up, but once they were in bed I could easily polish off a bottle!!! I have a family engagement party this weekend…that’s going to be the real test. I’ll let you know how that goes!

Liz x

(And well done on the 2 half marathons…next year a full one?!)