Last reply 10 months ago
Help with PPMS

Hi everyone! I have PPMS and that’s why I wrote before the neuro can’t really help me. Fampyra doesn’t help. Even had Tecfidera before. I am mostly trying to find other people like me who really are not able to be helped with DVTs which are for RRMS. I am wondering if I should be arranging something else – scary because I’m arranging to have a wheelchair and homecare. I have a son who is 12 years old also. If I could connect with another person like me it would be nice…In my country it will be different than in other places, plus my income is low. You are all great!!

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stumbler
11 months ago

@jcorvec , in this respect, we have to live for the day. We just don’t know what may happen tomorrow. But, there again, nobody does!

We all have to call on whatever support is available. If you need to educate any family members, then we can point you to some appropriate literature.


edmontonalberta
11 months ago

@jcorvec

Jennifer; long term husband; very impressive young lad; Moncton is a very nice place (I drove through there a few times years ago) … Overall you are doing well.

Not sure why they have you on medication – my Neurologist tells me there is nothing to stop PPMS. A solid healthy diet is the only thing that will slow things down. And of course, proper physical exercise…


jcorvec
11 months ago

Thanks you guys! Edmontonalberta I would like to please know what your diet and exercise regimen are – I have tried for 3 years to ask and look things up but haven’t gotten good answers. It would help me.


edmontonalberta
11 months ago

@jcorvec

Jennifer,

Due to spine surgery, my exercise options have been limited over the past 18 months. My 1st wife lived a completely healthy lifestyle; she was dead at 31 from Scleroderma. My present wife lived a completely healthy lifestyle; she was diagnosed with Lupus more than 15 years ago – stopped it with proper diet. She is the one you should be chatting with… 😉

I have given her your name – Jozefina will contact you via your Facebook page…

Gord


darios
11 months ago

https://youtu.be/rPhv7unWUdI I was hit hard in 2012 with this disease and now I struggle to walk! I just did HSCT in mexico and hoping for the best, I am worse then ever after all the Chemo! Hugs to you ..Not an easy life!


darios
10 months ago

Look into HSCT..Its the closest thing there is to help with PPMS.. I feel your pain!!

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