Today, September 4, 2017, is my four year HSCT stem cell Birthday. Honestly, nothing new to report, still holding on progression free. If you read my 1, 2, 3 year post updates, you can see how I’m doing. Not complaining at all, no progression is what I continue to pray for.
I continue to workout 5-6 days a week. Either walking, lifting weights, or taking a HIIT class. I’ve moved since my last update and no longer have access to the amazing classes, and people, I had while living in Dayton, OH, but I’m trying to find a new groove. I have walked further, 6.75 miles is my new record, but I found that to be too far for me at this point, it took me a week to recover. So I keep my long walks between 5-6 miles.
Thank you again for all of those that have cheered me on over the past several years.
Life is good!
VW
Kickin' MS with HSCT 
Sep 08, 2017 @ 00:43:52
Fantastic!!! So impressed by your amazing progress!!!
Love from R&D in Amarillo
Nov 17, 2017 @ 00:25:26
Great inspiration i am Luis i am in India and doing hsct i find lots of strengh talking to you ….Tanks Luis
Nov 18, 2017 @ 09:20:28
Hello,
I am Pepi and I also have PPMS. I would like to know more about your situation, because I’ve asked for the treatment in Spain but the doctors don’t think it will be appropiate for me. These are some questions I would like you to answer me:
How old are you?
Which is your edss level?
Where did you have the treatment?
Nov 18, 2017 @ 09:56:58
Hi Pepi,
I’m 51, so 47 at the time of HSCT.
My EDSS is currently 4.5-5, unless I’m sick, really tired or stressed out, then it will go up.
I had HSCT in Moscow, Russia. Aug/Sept 2013.
Here is a link to a FB group for people with PPMS looking into HSCT. https://www.facebook.com/search/top/?q=hsct%20for%20ppms
And here is a link to the main HSCT group. https://www.facebook.com/search/str/hematopioetic+stem+cell+transplant+-+ms+%26+autoimmune+diseases/keywords_search
Good Luck to you!
Vicki
Dec 08, 2017 @ 11:13:44
Hi, My name is Isobel, I’m 22 and I think I’m about to be diagnosed with PPMS. I’m hugely concerned and feel like my life is falling apart. Would you mind telling me more about HSCT?
Dec 09, 2017 @ 09:21:00
Hi Isobel, It would be pretty rare for someone as young as you to be diagnosed with PPMS, it usually hits in the 40’s. RRMS can strike people of your age. I would recommend joining the main HSCT Facebook group, here’s the link. https://www.facebook.com/search/top/?q=hematopioetic%20stem%20cell%20transplant%20-%20ms%20%26%20autoimmune%20diseases
HSCT is not a stem cell treatment, but a chemo treatment with your own stem cells used to help you recover faster from the chemo. It’s in clinical trail at Northwestern University, in Chicago. Dr. Richard Burt is the doctor performing HSCT there. HSCT is also done around the world for MS and other autoimmune diseases. I had mine in Moscow, Russia, they are one of the facilities that will treat PPMS. There are also two places in Mexico, Puebla and Monterrey.
Dec 10, 2017 @ 19:36:11
Hi, thank you!
I know it’s rare but my neurologist says I have All the symptoms. He’s just waiting on the proof 😦 my right arm and leg are heavy and weak and I have poor balance. Came out of nowhere. I hope HSCT works for me
Apr 02, 2018 @ 11:16:36
Hey, I am even younger then you and very likely have PPMS. Did you tried HCST or did you found any new information if it also works with PPMS?
Mimi
May 17, 2018 @ 09:52:41
Hi Mimi, I’m not sure what you’re asking. I did have successful HSCT in 2013. It is the only scientifically proven to stop MS progression, including PPMS. Here is the link to the main HSCT facebook group, you may want to join there to help with your research.https://www.facebook.com/groups/149103351840242/
May 15, 2018 @ 15:00:44
I think I’m about to be diagnosed with PPMS. I’d love to talk to you about your experience with this. I’m in Pennsylvania.
May 17, 2018 @ 09:50:29
Hi Megan, I’d be happy to speak with you when you get your diagnosis. Just send me a message here and we will connect. Also, here is the link to the main HSCT Face book group, it’s a good place to start. https://www.facebook.com/groups/149103351840242/