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