New to the forum Oct 2021

Hi all
I am new to the forum but thought it might be good to speak to people going through the same issues.
I am a 41 year old female was officially diagnosed with highly active RRMS in May after having at least 3 relapses in a year and am currently having Tysabri every 28 days. Am 2 treatments in.
I had double vision 12 years ago and was told it was a lazy eye muscle and had a bad back in 2018 where I couldn’t move, had an MRI and some physio and it’s been better ish. Now after review it seems there are 5 lesions on my spine as well as well as “multiple” on my brain.
Most of the time I accept what I have and can deal with the pain and numbness and just crack on but sometimes I am just tired of feeling rubbish and something aching and being judged by others because I am just so tired. On the plus side, I am pleased I know why I am so tired and why my body hurts! Catch 22 I guess

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Welcome!
You’re in good company here - we’re all knackered and falling to bits, s l o w l y ! Feel free to unload :+1:

Getting an MS diagnosis can take a while and as you’ve discovered, can be ignored or misdiagnosed for years. I’m in the same boat: first episode 2003, misdiagnosed for the last 10 years and in reality, fairly rapid progressive MS for the last 5 years. And yet I was diagnosed at the start of this year…

It’s a balance: keep fighting it, by being the best you can possibly be, whilst acknowledging it’s there and will be dragging you down steadily. We all do our best!
Graeme

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One of the few benefits of being older than you is that I no longer give a flying “fig” if others judge me.
I do understand the notion of being tired of being unwell, the only answer for me is either a small rant or distract myself looking at nice stuff.
Hope you feel a bit better soon
Mick

Hello Webbie

Welcome to the forum. I know for many years you’d never have wanted a welcome somewhere like this, but truly, your reaction to diagnosis is very healthy.

Being generally miffed at how cr@p MS is and yet glad you are now diagnosed and on a great DMD like Tysabri is definitely a good attitude.

It sounds like you are suffering fatigue. Many/most of us do. The only real answer to dealing with it is fatigue management. Have a look at Fatigue | MS Trust

I’m in the same gang as Mick in that being older, I don’t give a flying fig what anyone thinks of me either. It’s certainly a comfortable state of mind to attain. Being able to say ‘stuff it’ to whatever people might think is really rather nice.

Sue

Thanks for the messages :blush: it’s nice to feel welcomed and read other people’s management of MS. I will stop caring what others think at some point I am sure. I am just not good at looking after myself and realising I need to stop!

Hi,
i am also a newbie. I was diagnosed with RRMS in 2007. I suppose a ‘prime age’, i was 23. Up and downs ever since, more ups than downs from the outside, but other way mentally. MS is difficult, and i think telling people without physical backup, they use to think i was a hypocrondiac (probably spelt that wrong lol). Having MS has given me a different look to life for the best. Since being diagnosed, i lost weight, quit smoking, got married to my angel, have 3 step kids, 2 of my own boys. Life is a challenge and having MS thrown in, is like having a new set of rails to go on in your rollercoaster ride of life (getting too deep here lol).
I see me MS as a challenge, it is horrible but it has changed me for the best.

Stef.C

Hi Stef :blush: I agree, in some instances MS has changed me for the better and helped me realise what is important…. My husband… my boy… sadly I needed that, as we all do as humans… (I still forget sometimes though :frowning:)

Chris - I looked at Ocrevus as well and it really was a toss up. One of those times you want someone to decide for you :blush: good luck and let me know how you get on

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Welcome to join the mssociety community.