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Hope

Diagnosed last year as SPMS. No treatment. 35 years old. 3 amazing kids. Fabulous husband (even when he snores!!) .Great job as a middle manager in a school and active runner. Raised over £3000 running 2 marathons in 2013 and fund raised by running half marathons and 10ks for children with cancer and TOFS.

Upset but not defeated.

Contacted England athletics and got classified as a para athlete and have a Paralympic coach. Training hard in hope of Qatar and Rio. …

Still felt like a life sentence “get as much in as possible”. Living under the cloud of MS. Little hope.

After months of waiting got my second opinion today. Supported by optho-neurologist, MS nurse and my GP.

Met a brilliant consultant who uttered the words “you have categorically NOT got secondary progressive MS”. “Yes, you qualify for treatment and we need to keep a very close eye on you as you have generally been well and recovered well from relapses, it is only this past year that your ms has been active and left you with this residual disability”.

Starting tecifidera, But if I continue to relapse I will be offered the ‘strong guns’ Lemtrada.

He admitted that without treatment, in around 10 years or so, life would be very difficult and praised my attitude and that I am not looking back wishing I had stood up for myself.

I shouldn’t have to fight for treatment but I did. I am so thankful for those supporting me.

I don’t have to train hard, but I do and as the neuro agreed, it might blooming hurt for a few hours or days after, I might collapse after running a race, but healthy body, healthy brain and I am stronger in the ‘long’ run (though I can’t do a stitch over 200mthese days!). Hope I can do us MSers proud ths year with my running x

feel like my ‘life sentence’ has been delayed, hoping I do well on tecifidera and feeling hope for a future I was so uncertain of (though I know you can take nothing for granted with this blooming condition).

Much love to all and and I hope you are feeling better Carole if you read this x x

stacey x

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holy crap! what an awesome post!!!

congratulations on your attitude.

MS truly is an opportunity to live life to its fullest; to its absolute best.

good luck and never surrender this life, to one that you do not want.

hi,

i’ll bet that many other MSers will agree, that without running another race, you’ve already done us all proud! i couldn’t be happier for you that you’ve been put on tecfidera, i’ll keep my fingers crossed for you.

wendy xx

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hi stacey

so happy for you - meeting such a fab neuro, getting classed as a para athlete and establishing yourself as having a great attitude.

thanks for your concern.

i had a slight repeat of it all this morning.

saw my ms nurse today so she has been told about it.

if it happens again over the weekend i’ll go to gp on monday.

carole xx

Congrats Stacey, I can quite imagine how you feel I’ve had a few ups and downs too! The para athlete bit is amazing, you should be be very proud of yourself

I was a fitness instructor, I taught polefit/dance at the gym, I could deadlift my bodyweight up to 2/3 weeks before MS diagnosis and it was a PPMS dx at that I wish now that 'd been a but more clued up when I was diagnosed… I’d been seeing gastroenterology for a couple of year before I had the rapped nerve problem, oh hindsight is amazing!

Things have all changed in the last month tho. I now know that I do have RRMS after all (and a lot of scars so not sure my right leg will ever work properly now), I’m hoping to get on a trial but failing that, I have a choice of Lemtrada, Tysabri or tecfidera. Whilst I think tysabri is the favoured choice, I would prefer tecfidera

You are so right, hope just makes things so much easier to tolerate

Wishing you all the best

Sonia xx

Thank you Sonia,

you have definitely had lots of ups and downs but so pleased you get treatment, it’s horrible about your leg but there are some amazing stories about lemtrada if the trial doesn’t work out, which I hope it does and makes a big difference to your life x x In a way I have been lucky with running, I could transfer to shorter distances and I think all those amazing para athletes are the reason why the sport has grown so much x

you say you were a gym instructor, think you can still be one x Your right leg doesn’t work, my left leg doesn’t. Some people have both legs weak - but we still need to work them!

So many people with ms and other disabilities need fitness instructors who understand and know what to do…(just thinking!!!). There is so much evidence that exercise benefits people with ms, yoga, stretching, walking, running if you can - anything x I think you have the chance to do something amazing with all that fitness back ground and having MS x x

anyway, 3 cheers to hope!! X x all the best x x

stacey x

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I re-homed my pole earlier in the week, I gave it to another instructor who I adore and even taught a few years back - 3 of my students go there now I couldn’t resist seeing the poles and despite doing nothing for 2 years I felt like I could lift myself but could not shift my right leg, so couldn’t even spin… weirdly, I still have impressive biceps & I can still feel my abs but 6-pack can no longer be seen due to podge lol. I read something earlier about using a wii, I may have to get one! I do stretch but that’s not too easy now.

To be 100% honest, I fell in love with poledance and that’s the only reason I got fit, I was a total couch potato before I started at the age of 35 and ended up teaching at Gold’s gym and stretching like a loon to try to get the splits I’m lucky it was only a part-time thing.

Yes, three cheers for hope! Stopping things or slowing them down would be amazing!

Sonia x

I agree, stopping or slowing things down will be amazing, that’s what I have my finger crossed for x x

it’s rubbish about your pole :frowning:

do you still weight train?? - I am just starting strength training cause I am so weak - am enjoying it but I don’t have impressive biceps at all!! You must of been flexible to do the splits - when I bend over I am about 10 inches from reaching my toes! Haha!

The wii is quite good, I do have one but it’s not set up - the kids used to love playing it as well x maybe I should dust it off out the garage !!

Fingers crossed for good news about your trial, stacey x

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I totally admire your Boudicca deeds and train of thought.

Bless you and go girl…but take those all important rest and tlc times, yeh?

pollx

Suppose it is a bit Boudicca!! But I think she-ra!!! (Not that any one remembers her) haha!!

i have no choice, my legs refuse to work when tired!! I know I am lucky that I can run fast still,but I don’t run when tired and always listen to what my legs are telling me !! Have my first race soon enough over the 100m,200m and a long jump for fun- fingers crossed x x too often I am found on my sofa playing games so don’t worry about rest!! Xx