2 Years Post HSCT And MS Still Stopped

[step]

Step,

If you have a facebook account, check out this group. Many people that have gone thru or are going thru HSCT are members (including George) and there is a wealth of information available.

http://www.facebook.com/groups/149103351840242/

Thank you Shaight,
I will certainly get a facebook account. Wish I'd met you beautiful people before.

All the best
Step

[bspotts1]

Hi Step,
I understand that Dr. Antonio Uccelli (Genoa) is one of the worlds leading researchers using mesenchymal stem cell transplantation. You might seek him out if you decide MSCT is for your wife. I have been unable to find out much about him or any treatments he may offer so if you find out anything of value, please let me know. My wife is 62 and PPMS. Being 62 she is not very enthusiastic about any type of chemo so MSCT might be for her.

Good luck!!!

Brad in Sarasota

[bspotts1]

no posts here in over a month??? something wrong with my computer???

brad

[shaight]

the Facebook site has taken over. it's so full of information that it is difficult to keep up. their are currently four people that just (as in a couple weeks to a couple days) went thru HSCT and many more in process of recovery or preparation. George is very active on that site also.

[KateCW]

What's the name of the Facebook group?

[georgegoss]

no posts here in over a month??? something wrong with my computer???

brad

Hi Brad. . . . Shaight is right. Since we've gotten together and started the Facebook forum "HSCT for MS" it has really taken on an active life. I usually spend most of my time over there, but hope I can periodically stop in here, as well (good people here).

It's personally exciting for me to see what's happening in the FB forum. . . . indeed there have been at least four people that have recently completed HSCT at various facilities for their MS, and several others that are just about to start, and many more planning on it. I'm excited to see people actually seeking a 'real' medical prodedure that has the real potential to completely stop and reverse their underlying disease activity and progression. And also nice is that we don't allow participants to push commercial interests or things we know to be scams, such as ICM / Cell Medicine / Stem Cell Institute in Panama.

The nice thing about the HSCT FB forum is that we just focus on the science and "paying it forward" (wonderful term originally created by Carmel and Scott Turner) helping people that have had, or plan to have HSCT (including other autoimmune conditions in addition to MS).

Here's the FB forum site (in addition to, not in lieu of this good TIMS forum). Join if you'd like, or just read from the sidelines. Your input would be appreciated since we all have the same fundamental goal. . . Beating MS!



Hope everyone is well!

- George

[georgegoss]

BTW. . . a recent posting from the HSCT-for-MS forum that I wanted to share. I'm confident that Allissa's underlying MS disease activity & progression has been completely stopped and I reasonably expect that over the next 1-2 years her body will heal sufficiently to reverse a large and significant portion of her existing MS disability, just as happened to me following my own HSCT:

Allissa Lindley Wilson
Hello Group, I had my HSCT on March 27, 2012 in Bangalore India at Manipal Hospital. I was diagnosed in May 2008 and placed on Copaxone. Lost my ability to walk for 3 months with athis 1st flare at diagnosis, and then suffered a grand mal seizure which left a large lesion on my frontal lobe. Long story short is that I have tried Copaxone, Avonex, Tysarbi, Methotrexate with Large Steriod Pulses, and Gilenya. Nothing slowed my progression since every MRI continued to show progression in my brain and spinal cord. I always have NEW AND ACTIVE lesions in the brain and spinal cord every 6 months on the MRI's. My neurologist saw my disease progressing very quickly and said it was Progressive/Malignant MS, and he didn't believe I would live past another year at my current rate of progression. He suggested I try to enter Dr. Burt's trial for HSCT but Dr. Burt decided I was too far advanced for his trial. I almost gave up at that point, but then I applied in Germany but was also denied, but gained approval in Israel with Dr. Slavin but I could not financially pay what he was wanting to perform this procedure. I was so thankful to learn about Manipal in aIandia from Richard Syrop, George Goss, Carmel Turner, and to Dr. Amit Rauthan at Manipal Hospital. I am posting my story because I don't want anyone to feel like they should just give up. Don't give up!!!! My situation looked very bad, especially considering my neurologist stated I had TOO MANY brain lesions to count, and 7-8 spinal cord lesions. The neurologist in Chicago working with Dr. Burt looked at my MRI discs and said he didn't know how I was still able to function with the amount of damage he saw on the discs. My advice is to FIGHT because this is your life and if you don't fight for it, then who will??? I hope you take my post as a positive bit of information. I also want to share that I am not no longer suffer from heat intolerance, and I was able to take my first HOT HOT HOT bath in almost 4 years!!! I took a long BUBBLE BATH!!!! I know that sounds silly to some people but I know that all the women with MS that enjoy hot bubble baths will realize how excited this made me. My advice is to NEVER give up! Love all you HSCT people. Hope to post more as I recover.

[bspotts1]

thanks shaight, george and others....i was wondering where everybody went....will definately be trying out the facebook site.

...and.... congratulations to allissa!!!!! i look forward to following your progress.

brad

[shucks]

It has been pretty lonely around here Potts. My job and position make me unlikely to join the Facebook page, and since It is members only, I can't lurk.

[shaight]

shucks, why don't you just join FB as an alias?

the page was locked as private to keep the trolls and other spam away. we have almost 170 members in just two months. one women is going home today after her HSCT procedure...pretty exciting stuff!

[bspotts1]

hello step,

are you still visiting this forum??? i'm very interested in your msct research and was wondering if you learned anything about dr. uccelli? another name i've come across is dr. gianvito martino, a neuro-immunologist and director of neuroscience @ san raffaele hospital in milan. seems like you have a lot of good research going on there in italy.

good luck

brad

[Pesho]

Got information for the clinic in Moscow, Russia. The price is 40 000$, just the stay is from 30 to 40 days, that looks a lot for me, correct me if I'm wrong. Here is the whole answer:

Dear Peter,

During the last several years immunoablative chemotherapy and
hematopoietic stem cell transplantation has been established as a
therapeutic option for multiple sclerosis patients. The efficacy of the
treatment is about 90%. Please, note that it is not just a stem cell
therapy, but a complex treatment program, where immunoablative
chemotherapy is followed by hematopoietic stem cell transplantation. It is
performed according to international standards and its efficacy has been
proven in numerous clinical trials. The price of the full program of
treatment is about 40 000 USD. This price is all-inclusive and it covers
all medicines and diagnostic procedures, costs of lodging and boarding (an
aseptic single ward during the transplantation and a standard single ward
before and after it). In total, you have to stay in the department for
about 30-40 days to undergo a whole cycle of diagnostic and therapeutic
procedures.
You can receive information about the possibility of treatment in our
department by phone + 7-915-290-00-67.

Sincerely Yours,
Denis A. Fedorenko MD, PhD,
Physician, The A.A. Maximov Department of Hematology and Cellular Therapy,
National Pirogov Medical Surgical Center,
70 Nijnia Pervomayskaya,
Moscow 105 203,
Russia

[CureOrBust]

... a therapeutic option for multiple sclerosis patients. The efficacy of the treatment is about 90%...

I am not on facebook, so cant view the pages. Is there much talk and or information from the 10% that it does not work for? I have tried many things before and all have failed. I have also seen the non responders drowned out by the excitement around those that have responded.

[shucks]

The non responders are generally people who are too far down the road to help. If there is no inflammation then to benefit from this treatment. George has some numbers that are a little higher than that for people that are farther along the road. It is still the best thing out there if you can afford it (I am fighting with my insurer now over it with very poor results and I am a trial atty). It is a tough decision to make and a tough thing to get your mind around, but the science says it is the best thing going.

[shaight]

... a therapeutic option for multiple sclerosis patients. The efficacy of the treatment is about 90%...

I am not on facebook, so cant view the pages. Is there much talk and or information from the 10% that it does not work for? I have tried many things before and all have failed. I have also seen the non responders drowned out by the excitement around those that have responded.

from what i have read, the 10% is unfortunately the people who have moved on to the neurodegenerative phase. again, this is from what i've read. so, it has been primarily the ppms patients. there is a question of efficacy with spms amongst the drs, but George has proved that theory wrong.