Last reply 2 weeks ago
Morning Newbie alert :-)

Morning all, my name is Matt (aka R-F-J)

I have recently found this site and hope that it will benefit me going forwards. I was diagnosed last year with PPMS and waiting for vaccines before I start DMTs of Ocrevus later in the year all being well.

This has turned my life upside down, as am a keen runner up to and including Marathons (+25) and can now only manage 5-6km, which I am so thankful for, but know that it wont last. I have also been placed into the redeployment pool at work as am deemed unfit to carry out my current day job (which I agree with due to pressure and high level safety decision making) Work have been fantastic…. but the journey continues…..

Looking to chat, share with others,

Take care and stay safe

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watsoncraig
2 weeks ago

๐Ÿ‘‹ Hi @r-f-j welcome to this group, we try to answer queries posed but remember the answers are from fellow members living with this thief not Doctors. I am 5 years post PPMS diagnosis and have had my first full Ocrevus infusion last month.

The main thing is, as crap as this is, to make light of it and donโ€™t let it own you.


itsmewithms
2 weeks ago

Welcome and I second the note above. I do something to push my boundaries every day. I was Dx 15 years ago and was quite a competitive horse rider then in dressage and jumping. But life changes and becoming a mother 18 years ago caused me to refocus and then a MS diagnosis. I still manage to get on our pony every once in a while but don’t have the strength for a posting trot anymore. My PT guy said that if we set that as a goal he can come up with some exercises ๐Ÿ˜‰ my neuro said that I actually look better now than our last appointment so that is good! In my mind I’m not so self-perception is not always the best. I have also started a new job as a cost accountant/systems implementation so staying challenged mentally as well. I started Ocrevus last October after 9 years on Copaxone and 5 on Rebif.

Don’t count yourself out. With the current DMTs and a healthy lifestyle we are changing the curve. So much more is known now then when I was Dx. At that point they had just come up with the first treatment and it wasn’t that effective. They also advised against exerting yourself. Now we treat and push and demand better and more ;-0

This group is great and there are so many good resources. Of course the MS Societies of the US and UK have good material as does Dr Boster on You Tube, “The Life of Seb” (good Yoga there too), NoStressMS and Dr Brandon Beaber.

It sounds like you have a good attitude – and that is the one we need ๐Ÿ˜‰


vixen
2 weeks ago

Hello @r-f-j and welcome to Shift, where of of us have had our worlds turned upside down at one time or another! And here we all are, survivors…. yep, positive attitude is at least half the battle. And being redeployed is a bit sobering I know, but if it improves your own quality of life and liability levels, then it’s a winner. All the best ๐Ÿ™‚


r-f-j
2 weeks ago

Thanks for the welcomes @vixen @itsmewithms and @watsoncraig, all very much appreciated


ray_thomas
2 weeks ago

Hi rfj
I have rrms and was my latest relapse was 18 months ago.
I too am a keen runner although never done a full marathon I have
Done roughly 8 half marathons (the midnight sun in tromso, Norway was particularity memorable (being at midnight in broad daylight and just starting to recover from the relapse)

I run most days (ranges from 5 to 20 )depending on how I am on the day )

My last relapse affected my eyesight (and still does )

I have had 2 full doses of ocrevus, third was due in July but was cancelled due to COVID…itโ€™s no happening next week (3 months later )

Itโ€™s a good dmd so donโ€™t give up

And as itsmewithms said
Healthy living and good dmd are changing the curve

This is a great group, and you will get loads of support

All the best

ray


r-f-j
2 weeks ago

thanks @ray_thomas, much appreciated


highlander
2 weeks ago

Hi @r-f-j
What Corp / regiment did you serve in?


r-f-j
2 weeks ago

@highlander I was in the RCT / RLC did 24 years (inc Jnr Leaders)

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