Well another month has flown by and I’ve now had my 6 month follow up Neurologist appointment and MRIs, so thought I’d update you.
First, I met with the Neuro at UAMS a couple of weeks ago, this was the first time to see him since I moved to this area just before leaving for Russia. With that being said, he doesn’t really know what my condition was before other than notes form my former Neuro and my before and after videos. Well…I first met with the intern, and he did all the strength test and walking test, and made the comment that my strength was that of someone without MS. 🙂 I still have hyper active reflexes, very obvious, since I almost kicked him in the face. Then he went and spoke to the head Neuro and he came to check me out. He was very interested in my story and wanted information on Dr. Fedorenko and Dr. Burt, which I gladly provided. I then showed him my walking videos and he was amazed. He said to come back in 6 months so we can celebrate more of my improvements. I told him I hope to be walking 2 miles by that time, and he said, he had no doubts that I would. So, that went very well.
Second, I had my MRIs on Friday, so for 2.5 hours in the tube with my head locked down I thought I would die. I’m claustrophobic, so this really is not fun, at all. I had to have him get me out of there twice. Anyway, I did finish and don’t want to do that for a very long time. It appears that nothing has changed since Russia, I still have the 3 very small non-enhancing lesions on my spinal cord, and that’s it. So, nothing new, is good news to me.
Lastly, we’ve been getting the word out about HSCT. I was interviewed on Good Morning Arkansas yesterday morning for MS Awareness Month. Brooke and Diana were interviewed up in PA yesterday, and the segment Kristy Cruise did for 60 Minutes Australia aired a few weeks ago. They were filming that while she was in Russia with me. If you want more, email the stations and lets shake things up.
Here is my Good Morning Arkansas interview, aired March 31, 2014.
Here is the interview of Brooke Slick and Diana Rees on We Are Central PA.com
http://www.wearecentralpa.com/story/d/story/hello-russia-bye-bye-ms/10386/T_T7nhMgW0OxWIOle5nwhw
This is Kristy Cruise on 60 Minutes Australia
http://sixtyminutes.ninemsn.com.au/8810871/Russian-Roulette-medical-treatment
Remember no one wants you to be better as much as you do!!
VW
Kickin' MS with HSCT 
Apr 01, 2014 @ 10:25:13
Nothing to say but FANTASTIC!
All the best with love from R & D in Amarillo!
Apr 01, 2014 @ 11:29:51
I am so excited for you that the treatment was effective but also I think much also has to do with the “fighter” in you. You are an amazing, brave and strong woman, Vicki, and so “story” will help so many !!
!
Apr 01, 2014 @ 20:23:31
Vicki – what an inspiration. I love following your blog and your progress. Your ‘never give up attitude’ is amazing. I wish you all the success in total healing. Sending love from Jacksonville! Helena Helms
Apr 01, 2014 @ 20:44:35
Thank you Helena, that means a lot!
Apr 02, 2014 @ 11:02:33
Hi Vicki,
Just saw your KATV interview!
YAY U!!!! I am so happy for you! Impressive progress, and I know how much effort you have put in . I’m from little rock and just had Stem Cell treatment for my PPMS at StemGenex in California March 17th. 🙂 I have a red trekking pole also, I affectionately call “stick” LOL.
Wishing you much heath!
Kristen
Apr 03, 2014 @ 11:13:05
Hi Kristen,
Thanks for your support. StemGenex is not the same as what I had, and will only give you temporary benefits, you’ll need to keep having the treatments over and over again. HSCT is high dose of Chemo to reboot the immune system and then the stem cells to help you recover from the chemo. One time deal.
Good Luck to you. PPMS is a beast.
Vicki
Apr 03, 2014 @ 17:47:34
Hi Vicki,
Great video clip!!! Very encouraging! Can I ask how you came to chose Russia and the non- myeloablative chemotherapy vs the myeloablative chemo for your HSCT. I have been following the HSCT FB page. Thanks for any help!
Deb Giblin-Davis
Apr 03, 2014 @ 20:25:53
Hi Deb,
To be totally honest, it chose me. I have PPMS and have not had any DMD to fail, and most places require at least two DMD’s that have failed. I then followed the blogs of several that went before and knew Russia was where I needed to go. I also like the fact that he did Non-Myeloablative because it has been shown as effective as Myeloablative without being as hard on your body and a quicker recovery time. I understand that there is a 20-25% chance that I could slide back and have some progression, but also that they will prescribe a chemo regiment here for a year and that has shown almost 100% successful in locking it totally away. So, that was such a small percentage that that would be needed, the faster recovery time, and the protocol in Moscow, I knew that is where I needed to go. Israel was my second choice, but the cost is over double and I’d not been able to follow as many people that had gone there to have a high comfort level. I felt such a peace wash over me when I met Dr. Fedorenko and walked the grounds for the first time, I knew this was where I needed to be and that it would work. So, I guess some of that is faith not science, but it’s a very personal choice and you have to feel you made the right one for you. Good Luck to you and please let me know if I can be of further help.
Vicki
May 26, 2015 @ 18:46:17
Dear Vicki, perhaps I’ve already written you; I have lost track of my posts! Your experience in Russia sounds so wonderful. I would beg borrow and not steal but do fundraisers to get my son, Joe the treatment he needs. But no one can so far tell me how much the treatment is. It sounds like you feel Russia is the best place, but I understand Mexico also has the treatment. We live in California, so it definitely would be clower for us. How do we find out where in Mexico? I haven’t been able to find a locator for all this info, especially the COST. Can you help me?
Thanks so much and many blessings to your continued recovery! Natalie
May 27, 2015 @ 09:09:37
Hi Natalie,
The treatment in Russia is $45K USD. There is a very long waiting list currently, I think it’s into 2018. Another facility has recently been approved and is accepting International patients in Mexico. The cost there is 760,000 Mexican Pesos. ($49,000 USD approximately).
Here are some links to FB forums that will give you additional information.
https://www.facebook.com/groups/149103351840242/
https://www.facebook.com/groups/mexicohsct/1394173564243496/
I hope this answers your questions.
Vicki
May 28, 2015 @ 22:58:03
Vicki, thank you so much for taking the time to reply. Yes, we thought perhaps it would run about 50 K but it is good to have a ball park figure. Thanks again. In my wandering over the web, so many people are asking about HSCT, one in particular was a blog from a dad whose son, Daniel, was homebound already and now he hardly sees the young man because he’s out socialing after receiving the treatment. Halleluiah!
Natalie
Dec 11, 2014 @ 11:55:57
Hi Deb,
Your blogs are extremely informative, thank you so much for sharing. Im am currently waiting to get an updated MRI and will then be applying. I have been in contact with Anastasia from Dr. Federenko’s office. 28 year old, very health male with recent diagnosis of PPMS (transitioned from initial RRMS, dx in 2011). My question to you is, how long after you applied did you have to wait until you actually went to Moscow and had HSCT??
Dec 12, 2014 @ 10:13:53
Hi Yianni, When I applied, it only took a week to hear back that I was approved. I was accepted the first week in May 2013, and was admitted on Aug. 19, 2013, so very quickly. I was only the 10th International patient treated there, so it was before the 60 Min. Australia segment aired. Now I understand the waiting list is into 2017. I was very fortunate.
May 26, 2015 @ 18:40:51
OMG did I understand you correctly that the wait list is into 2017! Is that just where you went or anywhere? How does my son, Joe, apply? Any info you can give me would be much appreciated! God bless you and may our good Lord continue to heal you!
May 27, 2015 @ 09:11:22
There is now a facility in Mexico, doing legitimate HSCT. You may want to check into them. The cost is apporx. $49K USD, based on the exchange rate.
Here is a link to the Mexico forum.
https://www.facebook.com/groups/mexicohsct/1394173564243496/
I hope this helps.
Vicki
Dec 11, 2014 @ 12:03:19
Vicki**
Mar 19, 2015 @ 15:12:26
Hi Vicki,
I just started following your blog. What an amazing story! I too am PPMS. I was diagnosed in 2013. In looking at your case, it seems we have/had very similar symptoms. I am 45yrs old. I have right leg weakness…foot drop…spasticity..cold intolerance…fatigue…urinary issues…Anyway, your story is so encouraging and I will continue to follow your progress. The stem cells are for sure on my radar. Hopefully when the time comes and I am ready to pursue this avenue there will be something available. Stay strong and thank you for sharing your story 🙂
Mar 21, 2015 @ 11:22:59
Beth, My only regret is I didn’t do it sooner. Don’t wait, once your disability gets above a 6.5 EDSS you won’t be eligible to have HSCT. Also, for HSCT to be successful it just has to stop the progression, any improvements are a bonus. Remember, no chemo, no cure. The stem cells alone are not what re-boots the immune system, it’s the chemo.
Good Luck!
May 28, 2015 @ 09:54:46
Beth,
We recently started a group HSCT for PPMS, just for us with PPMS.
https://www.facebook.com/groups/361166727405472/
Mar 21, 2015 @ 12:37:48
Thanks for your response Vicki. This is an avenue that I am seriously considering. I have downloaded a few of the papers that Dr. Fedorenko helped to author and the results are encouraging…especially for the progressive MS. I guess I am just trying to get myself comfortable with the idea. I also want to share this info with my MS neuro…not getting my hopes up on that…as you and I both know that most do not support this treatment…but I guess on the off chance… I guess I would just like to get his opinion at the very least. I am just one of those types of people that can’t just do something impulsively! I so wish I was though. However, I do know that I need to make some decisions soon. As you mentioned, the procedure will be unavailable to me if I wait too long. Again, I am so encouraged by your story. You are helping so many people by sharing your journey!
Beth
May 26, 2015 @ 18:38:08
Beth, I’ve asked everyone: how much does this cost? So far, can’t find the answer! Can you tell me?
May 27, 2015 @ 12:13:12
Hi Natalie,
I believe the cost depends on where you go. You may want to join the Facebook group dedicated to HSCT. There you will be able to find all of the answers you are seeking 🙂 https://www.facebook.com/groups/149103351840242/