NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Caregivers Support (https://www.neurotalk.org/caregivers-support/)

- - ppms (https://www.neurotalk.org/caregivers-support/170524-ppms.html)

My sister was diagnosed with ppms 4 years ago,
She went for treatment, but it only made the progression of ms worse,
:(The doctors said there is nothing more they can do for her, what is the road ahead going to bring us? I wish there was something I could do for her!

Quote:

Originally Posted by sadsister (Post 883942)

I am dealing with an incurrable disease, too. It is a real bummer. Think how fortunate you life has been up til now.....:hug: paulapepper

Sadsister, I'm sorry to hear about you sister's condition. What medication was she on that made her worse? None of the MS Disease Modifying Drugs (DMDs) are designed to improve the patient's condition; only to slow progression. And none of them are known to work on Primary Progressive MS because it is a different animal and even less understood than the other types.

How about asking your question in the MS forum? Maybe someone can give you better advice than mine, which is to be your loving sisterly self!

Thank you sparky!

She was on chemo therapy called Mitoxantrone, it was supposed to slow down the progression of the MS.

I think the hardest thing for me is that my sister has become a complete different person.
With the MS came a new personality and even new looks!
I found a photo of her that was taken a year before she got sick and I could not believe how much she has changed!
Another thing is she is now like a child of 12 (she will be 31 in June).
And ever since she got sick a kind of had to become the 'big' sister.
How I miss those days when I asked her for advise and talked about my problems! Which obviously I can not do anymore!

and the sadest thing of all is she keeps on asking when she is going to die, because she overheard me telling my parents that there is nothing more the doctors can do for her, I sometimes don't know how to handle these situations! No matter how hard I try, I just cannot get used to the idea of her being sick and that there is no cure!