Stem cell

[Sleek78]

I saw on Facebook that there taking volunteers to do stem cell research on people that have MS.

Have any of you had this done or think this is a good idea?

[jimeka]

Hi Ryan, firstly how are you and how is your throat? As regards stem cell, I don't know anyone who has has it. If you go on the stem cell of America web site, they make it look so easy, just an injection either intravenous or subcutaneous and then they say that there are no known side effects. 3 to 6 months post injection with positive results. Question I would want to know, is where do the stem cells come from. They mention that they are fetal but I don't really understand that. Anyway if you find anything out, please share. Thanks Jimeka

[Sleek78 in reply to jimeka]

Hi Jimeka my throat is still sore and still not over it all yet still feel under the weather a little bet. I just saw a thing on Facebook about the stem cell thing and was it for sure about it and I called them today and they want me to fill out a application and if I qualify for it and then they want me to pay $14,900 to have it done after they say it's a free trial thing they want volunteered to do it. I was just curious about it.

[jimeka in reply to Sleek78]

Hi Ryan, I have never heard of a volunteer having to pay for anything. Be careful, ask a lot of questions first. Hope you are soon better, sore throats are not nice.

[KBlake in reply to jimeka]

Yes my husband and I thought the same thing. They are asking you to pay to help them do research!

[DerVaa in reply to Sleek78]

Hah!

[lucycgh]

Yes it is, but I'm not in the States sorry

[1RiskyRich]

Stem cells & HSCT are different. Regular stem cells doesn't reset the immune system. You probably saw an ad for Stemgenix (spell check). HSCT can not be done in the USA till 2022. You need to go abroad for the real treatment. I did it & I'm 6 months post. Highly recommend finding a way to do it. MS won't wait till 2022 & I can only imagine the wait list.

[Kj9681 in reply to 1RiskyRich]

I'd love to have it done too!

[msgirl in reply to Kj9681]

ME I DONT SEE WHY HAVE TO WAIT I NEED IT NOW

[jkdavid99 in reply to 1RiskyRich]

I am confused what exactly did you have done?

[1RiskyRich in reply to jkdavid99]

HSCT is a treatment where you are fully checked out by a neurologist, given 4 MRI's (brain, T-Spine, C-Spine) lung doctor ft an xray, a head shrink & hematologist. Your then given 2 days of chemo. 1 week of 2 shots per day to make your stem cells reproduce. They are then harvested. Then 2 more doses of chemo to completely wipe out your immune system. Your them given back you stem cells to reproduce a new immune system with no knowledge or history of MS. Can be done with out the stem cells but they speed up the recovery. I highly recommend it.

[jimeka in reply to 1RiskyRich]

They are doing that treatment at the university hospital here at Sheffield in the uk, but it's only for people who have RRMS, so I don't qualify. Here you have to spend 17 weeks in isolation, because the chemo makes your immunity zero for quite a while, so no contact with anyone only through glass. It's too early to say how well it works.

[Jesmcd2 CommunityAmbassador]

Hey Ryan, Sry you still don't feel good. And paying to volunteer? Yeah l would be doing some major background checking on that. If nothing else they should be paying YOU. As in med bills, time, transportation stuff like that. Be careful before you sign that dotted line. Sometimes things are just to good to be true. Call me a pessimist

[Joalyn]

I will see if I can find the article, but they just completed a long study in Canada.

[Joalyn]

If you Google in stem cell foundation Canada multiple sclerosis you'll find the research being done there. The latest one combined chemotherapy with it.

[1RiskyRich]

Unfortunately most trails are funded by pharmaceutical companies. They make money as long as we're sick & need their products. After HSCT, I no longer needed a $19,606 every 28 day shot of Tysabri. My last shot was February 2nd. The way I see it, that's at least 8 infusions or $168,848 that so far they did not get from my insurance. They lost a quarter of a million dollar customer. Unfortunately us being sick is what keeps them rich. So why would they fund this type of trial?

[nes78]

I had HSCT at northwestern in Chicago 3 years ago. It is all about the chemo! My edss went from 6.3 to 3.5. I wish I had it sooner. I still cannot work but the physical benefits were tremendous for me. We are all different. See my short story. Btw Medicare and my secondary covered it all. vimeo.com/130065935

[MrBigCat in reply to nes78]

Hi Nadine, thank you for sharing your uplifting and heartwarming story. The video is well done, concise yet giving a lot of information. I'm surprised with the high success rate this isn't widely done. Any thoughts?

[nes78 in reply to MrBigCat]

I don't like to think this way but in the end it must be about the money and the drug companies. I was on those drugs for years and paid almost nothing for them but to see what my insurance was covering was unreal. it took me being 35 in a nursing home to find this final option for me. my neuro at Hopkins talked to dr. Burt and it was decided there was nothing else for me and I was fortunate to be treated very quickly. if this had been available sooner to me who knows? I could still be working maybe. all I can do is try to share my story. it is just so cool that I don't need a shower seat anymore or a walker or anything! I am still on ssdi as no cognitive improvement but some people do experience that too. dr. Burt has used HSCT w. people who have ra, stiff person, schleroderma, other ai disease. please spread the word - people need to know about this

[Jesmcd2 CommunityAmbassador in reply to nes78]

All l can say is wow! Your story is truly amazing. You truly are blessed People do need to be more aware of this. When will the clinical trials be over for this? If the drug companies have any say in it, it will never be available for ppl like me who doest have have severe MS. Until it is. I know of a young lady in town that has severe MS and is going to Canada for this treatment. She said they have been doing it longer? And there is a place in Mass?

[nes78 in reply to Jesmcd2]

It is criminal that this is not offered in more places! or that people need to leave the USA. there are no guarantees of course but I was in a good position in that when first meeting dr. Burt I was flaring so bad the neuro gave me chemo before flying home. my partner found dr. Burts study on clinicaltrials.gov and the rest is history! The dr.burt fb group is really helpful and has grown so much in the past couple years. also I don't know if his trial is still open but believe you have to be rr.

I think you knowing about HSCT is itself great! just in the knowing you're ahead of the curve. and any doc. who drops you for mentioning it - drop them! I saw a report yesterday from the nmss and how they are putting 10 million into these new studies. Not ONE mentioned HSCT

[Jesmcd2 CommunityAmbassador in reply to nes78]

That's really sad that that they wouldn't put money into something with promising results.

[Ashirva in reply to nes78]

Good video! It definitely lit a fire under me and I'll be talking with my neurologist about it and doing research! Thanks!

Anne

[DerVaa]

I would volunteer for this program.

[HSCT2016]

I had it, HSCT, and I'm so glad I did! But who are these "volunteers?" I had mine done thru a clinical trial as the FDA has not yet passed it. So I would be careful and get more information. I'm happy to help. I also have a blog elliehsct.com and I know someone else who follows these posts who will likely volunteer to post her video which everyone should see.

[positiveness]

Hi! Right now I happen to think it's the next big thing to help treat MS, but that's according to the information I read and listen to.

[nes78 in reply to positiveness]

it is! Ellie and I had the same thing done and you can watch even more info with both of us speaking about our experience. happy to answer any questions.

m.youtube.com/watch?v=I8L_e...(Not working as expected?)

[lightweaving]

I had thought many years ago it was said this would be the miracle for MS and Parkinson. The tests were shut down when Bush came into office.