About
May 2012, I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS). There is no cure and no FDA treatment anywhere in the United States. PPMS is a very rare form of Multiple Sclerosis. I am otherwise a very healthy 46 year old female that’s always been very physically active and has a lot of living and life ahead with my husband and my family.
This disease is slowly paralyzing me from my legs up. After months of research my only hope of stopping or slowing down this disease is a Hematopoietic Stem Cell Transplant, which offers me a 50-60% chance of stopping the progression. In August 2013, with my family by my side, I fly to Russia and will be admitted for treatment.
Kickin' MS with HSCT 
Aug 25, 2013 @ 15:06:01
Hi Vicki. Congratulations on being accepted. All of your friends (human and canine) in the neighborhood are keeping up with what’s going on and looking forward to the day you come back to visit us. We will go on a long beach walk!!
Keep up your great attitude. I think you will probably look better than Demi Moore with a Mohawk. Yours will be curly. Looking forward to more posts. Fran
Aug 29, 2013 @ 18:46:35
Hi Vicki, I would like to keep in touch with you on Skype. I signed up but need to get your username so please send it to my by e-mail. Sorry you’re not feeling very well, but I realize this is part of the treatment.
This is part of getting well and returning home.
Love from LeeRoy
Sep 02, 2013 @ 18:42:24
Im wondering if you mind if I ask , how to begin on fundraising? I have no family and only a couple of friends, I really would like to do HSCT myself for MS. I have been approved for India. Just no money to go ahead. I have had MS for almost 12 years now. I just dont know how to begin. I can no longer work. Thanks and sorry if I should not have asked. Kris
Sep 03, 2013 @ 06:20:16
Hi Kris, I totally understand, it can be an overwhelming task. I was amazed as I told my story, more and more people jumped in and wanted to help. A group I had worked with in the design community really came together to throw me a bowling event that raised $16,000 USD. It all seems to come together, but you have to put a lot of effort out there and let people know your need. So, spread the word. You’re fighting for your life.
Good Luck, Vicki
Mar 01, 2014 @ 11:23:16
Your mode of describing all in this piece of writing is truly pleasant, every one be able to without difficulty be aware of it, Thanks a lot.
Mar 12, 2015 @ 13:14:37
I love your blog!!!!!!! So encouraging . What state do you live in? I finally found a physician who applauds my decision to go to Israel for HSCT.
Apr 13, 2015 @ 16:42:30
Hi I wonder if you could contact me via email id be interested to hear about your experience
I’m possibly ppms and have been told stem cell therapy is a no go for ppms
Thanks
Kris
Apr 15, 2015 @ 17:12:46
Hi Kris,
HSCT is not a stem cell “therapy”, it is a procedure that uses chemotherapy with the stem cells to help you recover from the chemo. I’ll send you an email.
Vicki
May 23, 2015 @ 23:38:09
Is HSCT done in the U.S.? Or only in other countries? What other countries. We live in California and wondering if Canada does HSCT because it is relatively close. Thank you!
May 24, 2015 @ 10:07:03
Hi Natalie, HSCT is in clinical trial at Northwestern University, in Chicago, Dr. Richard Burt. Dr. Burt performs Non-Myeloablative HSCT, the same type I had, but there is Myeloablative HSCT being done in Seattle, Fred Hutchinson Cancer Research Center, it’s more aggressive than Non-Myeloablative.
Canada does it, but only for Canadians, and they are very selective as to they will treat, so most of the Canadians that get HSCT end up going overseas. Russia, Israel and Mexico all have facilities that perform Non-Myeloabltive. You can ask to join the FB forum and there is a list of legitimate facilities. HSCT is a chemo treatment, which is what reboots the immune system, the stem cells are just to help you recover from the chemo. Here is a link to the FB forum. https://www.facebook.com/groups/149103351840242/
May 27, 2015 @ 11:59:23
Hi Vicki, I am 55 year old woman looking for treatment in Russia. I don’t know where to begin this journey, could you help me?
May 28, 2015 @ 09:50:24
Hi Denise,
I’d join the main Hematopoietic Stem Cell Transplant forum, look at the top under the files section for more information.
https://www.facebook.com/groups/149103351840242/
Here is the link to the Russia forum for HSCT, but I will tell you they are booked until 2018.
https://www.facebook.com/groups/404629779644453/
A facility in Mexico has recently come on line and just started treating international patients, they are another option.
https://www.facebook.com/groups/mexicohsct/
May 28, 2015 @ 15:11:03
I found some information on this treatment being done here in U.S. at the Northwestern Univ. Feinberg School of Medicine, Chicago, Il 60611. Contact DZEMILA SPAHOVIC, M.D. Phone: (312) 695-4960. Email: d-spahovic@northwestern.edu
Principal investigator: Richard Burt, MD
On May 27, 2015, I sent an email to the above address requesting information and last night I received several pages of information, INCLUDING AN APPLICATION TO SEE IF MY SON QUALIFIES! This is huge! My heart goes out to all patients and their caregivers! Blessings to all. Natalie
May 29, 2015 @ 08:47:18
Yes, that’s the clinical trial at Northwestern. They will consider RRMS patients, but not PPMS. I know many people that have been treated there. Here’s a link to their FB support group.
https://www.facebook.com/groups/709013479183271/
Vicki
May 25, 2016 @ 15:27:06
Hi Vicki, thanks for your effort.
my brother is 39 with Secondary progressive MS. Do you think HSCT can help him? and where do you advice should i take him, Moscow, Mexico.. ? Thanks
May 28, 2016 @ 08:23:00
Hi Mina, What is his level of disability? That will make the difference. Mexico will treat up to EDSS 7, and Russia 6.5. I was already an EDSS of 6, using one trekking pole to walk daily, at the time of treatment. So, the sooner the better.
Nov 27, 2017 @ 15:48:44
You are an inspiration keep fighting. I
Am almost dx with ppms and it as you know is a fun ride to say the least. I would like to get the HSCT treatment as well. If you have some time can I talk to you about the procedure and any info you may have would be great. Thank you for your time
Jason
Jason.james@cox.net
Nov 30, 2017 @ 08:21:08
Hi Jason,
Thank you for your kind words. Happy to answer any questions you might have.
You also might want to join the HSCT for PPMS group, her is the link. https://www.facebook.com/groups/hsctppms/
Vicki
Aug 19, 2018 @ 16:57:02
Hello, thanks for writing about your journey. Can I cite your blog in my crowd funding page?
Aug 20, 2018 @ 09:23:08
What specifically were you want to cite? Or just a link to the blog?
Feb 15, 2020 @ 19:01:22
Hi Vicki,
I am considering Russia for HSCT. I have watched so much of your journey. How are you doing now?
After much research I feel like Russia is the best. I really wish I could correspond with you via email.
Thank you,
Melissa
Feb 17, 2020 @ 08:52:55
Hi Melissa,
I’m still stable. I do have a lot of my symptoms, including walking, become worse when I’m sick with a fever, and that can take up to a month to settle back down. But, daily, I’m doing fine. I still need a nap mid day to make it through a full day, but it’s just part of my life now. Are you a member of the HSCT Facebook groups? That’s a great way to connect with others too. What type of MS do you have?
I highly recommend the facility in Russia, Dr. Fedorenko is amazing, I could’t imagine getting better care. A lot has changed since I was there 6.5 years ago, there is much more support now. I was only the 10th international patient treated there, and the only one the first week I was there. Now they have groups that go through the process all at the same time.
Good luck! It’s nice to hear from people that have read my story.
Vicki
Feb 18, 2020 @ 12:18:05
Vicki,
Are you completely off of MS drugs?
Apr 23, 2020 @ 10:02:01
I have PPMS, there were no drugs to be given. So, I’ve never been on any MS drugs.
Aug 13, 2021 @ 10:12:08
Hi,
I was wondering if you could send me an email to let me know how you are doing now?
I hope you are still well and progression has still halted.
I have recently been diagnosed with ppms and I’m considering Hsct in Russia or Mexico.
Thank you,
Jennifer