Last reply 11 months ago
Newbie here

Hi all, just registered so I’m new here! Would love to talk to people in a similar situation to me as so far I haven’t really met anyone!
First relapse early 2015.
Second relapse early 2017 + diagnosis RRMS.
I struggle with fatigue and brain fog a lot.
Working full time is sometimes really hard as I seem to struggle with getting out of bed, working non-stop a lot more than my peers.
I already have type 1 diabetes so this second diagnosis knocked me a bit.
I only met with my MS nurse in December as after diagnosis I got ‘lost in the system’. Still totally undecided about meds.
Would love to hear from you all 🙂
Amy x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stefski
11 months ago

Hi and welcome!
I hope you find this site helpful. I used it a lot when I got diagnosed in 2012 – it’s good to feel you’re not on your own. Xxx


amyb
11 months ago

Thanks stefski, that’s exactly it. I don’t really know anyone else in my position and that sometimes gets me down. ‘Why me’ etc etc! :p x


spangle
11 months ago

Hi @amyb,

I new to this site as well, and fairly new to the world of MS (diagnosed with relapsing/remitting in July last year).
I found full time work to be a real struggle due to fatigue and as you say brain fog. It’s still difficult but I spoke to my employer and they agreed that I could work a short day in the middle of the week which had helped a lot. I do a bit extra on the other 4 days so only reduced my hours by 1per week. Maybe you could try the same?
As for meds I’ve only tried Copaxone, it has the least side effects. Had a bad reaction though and it’s given me arthritis (hopefully that will clear up though). I’m waiting to discuss my next options..
I did find that starting on a DMT was a great help though. My symptoms started to improve so looking forward to starting on the next one.


stefski
11 months ago

I have only recently got in touch with my local ms society as I realised that I don’t know many people in ‘real life’ with MS. I was able to join a young persons ms group (they let me in even though I’m now 44 lol!). I find it really hard to explain my MS while at the same time not wanting people to feel sorry for me! Other people with MS just get it.
How are you doing? I hope you find what you need here xx


amyb
11 months ago

Hi @spangle,

Like you, I’ve cut down to just half a day on Wednesday, full days the rest of the week. I’d love to take a Wednesday off completely but just can’t afford it.
Do you feel as the the benefits of the meds so far outweigh the risks? X


amyb
11 months ago

@stefski, the ms group closest to me is made up of older people who are mostly quite disabled. Although I was flattered by the invitation to join them, I felt like that wasn’t really the group for me. But I will continue my search!
You’re right… I also think we must sound like real moaners to people who don’t have MS… sometimes I hear myself speak and just think ‘pull yourself together!’ Xx


vixen
11 months ago

Hello and welcome to you. I am similar ageand background story to you, there are quite a lot of us on Shift so you’re in good company. You can read about lots of DMT treatments on here using the search box, but suffice it to say intimately it will be the one which best suits your lifestyle if you decide to go for it. I chose Tecfidera as like you I am working and I too HATE mornings with a vengeance! Better in summer though…. Yes, everyone will identify with the cog fog. When I’m really tired, like on the train home from work I make myself play a word or similar game; it really keeps me focused and keeps the old great matter turning over. With your diabetes diagnosis definitely explore diets, there are lots suited to an MS way of life. Take care x


amyb
11 months ago

Hi @vixen, yep mornings are quite literally the worst ever!! I’ve read so much about DMTs but just waiting to actually speak to neurologist properly, but I’ve been waiting a long time. I know I’m on the waiting list because I got a letter the other day telling me to look out for another letter giving me appointment date! Lol
I’ve been diabetic for 18 years so I have always had a good balanced diet. I think it was the knock of getting another diagnosis of such enormity… I often think ‘I already have one, I don’t need another!’ Thinking about it, if I’m this lucky I should probably do the lottery!! Ha xx


tracyd
11 months ago

@amyb

Hi welcome to Shift 🙂

T1 is a tough ride, with an MS diagnosis on top I’m not surprised it’s knocked you for 6.

In relation to the fatigue, it might be worth looking into local MS therapy centres near you, I’ve found the hyperbaric oxygen therapy they offer at most really helped me with both fatigue and brain fog – might be worth a try.

Do lots of research about the new DMT’s that have come out in the last few years. There are some fantastic ones which can give hope of halting this MS nonsense in it’s tracks.before it gets it claws into your life.

You have a friend request, if you need someone to talk to I’m happy to share contact details xx


annie13
11 months ago

@amyb
Hi and welcome. I was diagnosed about this time last year. I also don’t know anyone, in person, who has MS. It does make you feel lonely alright! I too struggle with fatigue but I’ve found that a change in diet helped this a lot. I work 4 days a week and I live for that day off!! I am on copaxone and haven’t noticed any side effects. Hope you are well x


spangle
11 months ago

Hi @amyb,

Everyone’s different but personally I found such an improvement when I was on Copaxone. Friends and family were commenting that I was back to being myself. I was on it for 3 months without any major issues before I developed painful swelling of the joints (arthritis). I was truly gutted to be taken off it as thought I’d found one that suited me 1st time.
I’m told that the side effects will clear up given time now I’ve stopped taking it, and it has started to improve. Unfortunately all the old MS symptoms are also coming back.
I know with these medications it’s a case of trial and error. Personally I can’t wait to get onto another DMT (seeing my neuro next week 😊).
Continue with your research prior to your appointment as there’s no set drug for you. It’s ultimately your choice.
Let us know how your appointment goes?


amyb
11 months ago

It’s good to hear your experience @spangle… will defo keep you updated!! Would love something just to give me that spring in my step again. Like you say ‘back to the old me’. Maybe I’m wishing for a miracle! Part of me doesn’t even know if I’m brave enough to start a dmt. Watch this space xx

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.