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Re: 2 Years Post HSCT And MS Still Stopped
Posted: Mon Mar 31, 2014 1:58 pm
by coralsancetta
Hello, my son has ms he is 31 and has rrms and has had is for nearly 7 years, We are looking at hsct treatment, My main concern for him is his mental state, he has given up hope and does and cannot imagine this working for him. In the morning, unless you knew he has ms, you would not guess it. Fatigue and lack of balance and strength in his left side are his disabilities, but the major concern is his mental health, we are positive with him. what can anyone suggest who has had this treatment, can help him prepare him for this. He has suggested that if he was drugged up, he could cope with the treatment.
Re: 2 Years Post HSCT And MS Still Stopped
Posted: Thu Apr 10, 2014 8:33 pm
by vdelarenal
Hi georgegoss, first of all let me thank you for taking the time to share your experience with HSCT and helping others. My name is Vicente I live in Mexico and was diagnosed with MS 12 years ago. Been on Avonex 5 years and now I've been on Tecfidera for 3 and a half years (I started when it was on clinical trials when it was called BG0012). Tecfidera worked fine for me for the first 3 years but since 5 months ago it seems to stopped working.
I've read your blog about HSCT and find it very interesting, in one of your posts where you talk about the centers where we can find this treatment and it's cost, the cost you mention just includes the medical treatment right? For how long did you had to live in Germany and more or less what was the cost of that? (Sorry if you mention it in one of your posts but I haven't read them all) Could you get back to work immediately when you returned or had to wait some time?
Sorry for all the questions but I'm considering the treatment and want to get an idea of the total cost of it.
Thanks,
Vicente.
Re: 2 Years Post HSCT And MS Still Stopped
Posted: Sat Jan 02, 2016 8:15 am
by georgegoss
It's been a long time since I've been in this wonderful TIMS forum (I often direct others to this forum) and am sorry I have been busy with other things, like living my life without MS.
I just wanted to post a quick update of my post-HSCT status now that I've hit 6 years after my transplant and remain disease free.
Here is a detailed update. . .
http://themscure.blogspot.com/2016/01/6 ... lmost.html