MRI report @ 1 year post transplant

[izziebean]

I just got the MRI comparison report back on Friday. AND! no new lesions on the brain or spine since December. This is my first MRI since being diagnosed in which there wasn't a new lesion. The year prior to my stem cell transplant, I had four attacks, with the last attack having five new lesions with four enhanced.

For now it seems the transplant has halted my m.s. attacks (or I went into remission because I have relapsing REMITTING m.s.). Either way, my family did a happy dance this weekend.

eeeeeeeeeeeeeeeeee!

[inmoni5]

could you tell me more about your experience?

Congrats to you!!!! What a wonderful feeling it must be for you and your family!!

I just want to know more about your experience. How did you do with the Chemo? That is my only fear about it. I have the paperwork for the clinical trial in order to start the process but I just want to know more about the chemo.

Please and Thank you.

[frogvalleyve]

are there any new studies going on?

Does anyone know of any new studies going on for stem cell transplant? I just started a new drug, copaxone, but I don't have a great feeling about any of the drugs, whereas I do think the stem cell approach is feasible..I don't know where to start to find out more..I just started with a new neurologist, and I am not sure where to go, what to do right now..

[Sdickerson1]

I have Not but would really be interested in any info

[inmoni5]

NorthWestern University in Chicago...is doing a trial right now. I'm workng on getting into it. Unfortunately, it is a randomized trial..not gauranteed to get the transplant arm. You have to be RRMS, on a dmd for 6 months, w/active enhancing lesions and an acute flare needing steroids.

Also Cleveland Clinic is doing a Stem cell infusion treatment trial right now. For that one you have to have optic neuritis and other criteria. I never had ON therefore I didn't continue w/gathering info on this.

google "clinical trials US." and you will come up w/a whole list...you can select MS to see all the ms trials.

[inmoni5]

I have Not but would really be interested in any info

I am looking into where or if I can get the procedure done w/o the clinical trial in the US....just incase my doc puts me rpms they will not trial on progressive. The stats are really good w/this procedure!! My email is in my profile...I will keep you updated if you wish?? on what I find.

[lovejoy]

wonder why all the trials require that you just have rrms? is it because when it goes into remission they can say look this drug is working ? that just my sarcastic two cents worth.....on paper i have rrms, tried copaxone, chemo, and now gilenya if that doest'nt work can i have my money back? As a former contractor "ouch that hurts, former contractor" if i did perform or the product i supplied didnt perform i had to pay the customer off..... go figure big pharma you ca kiss my" fill in the blanks" lol

[jewlie]

Finding Stem Cell Treatment ......

Hi All!
Have just found you guys, we've nothing this good here in the UK.
Excuse my ignorance but is it possible to get (Autologous) Stem Cell Treatment in the States by paying for it or 'buying' it ?
It's virtually impossible to get on any trials over here & from reading your posts I'm guessing it's just as difficult on your side of the pond.
I'm determined to find somewhere while I can still make the journey or before I'm considered too old (approaching 50 & 2ndry pms).
I know you can access it in Holland but they're of dubious standards & use embryos etc.
Would Really appreciate any info !

[inmoni5]

Hello jewlie!! You need to reach George!! he has a blog that he has set up. google "ms cure" He explains it all in GREAT detail. You can purchase it in Germany for 80,000 euros. (I believe) When or if it gets approved here in the states Chicago charges 150,000 US dollars. Be careful when researching this treatment when it says stem cell treatment.....this is not the correct procedure. You want the stem cell Transplant with the chemo.

George is amazing and will help you if he's able.

Right now I am trying LDN (I suggest trying all avenues before HSCT). LDN is a wonderful drug and safe. Do some research on LDN too.

[jewlie]

George.........

Thankyou sooooo much!
I think I've found him - you're right he's covered all of it & very objectively. LDN ? I'll google that one too!
Thanks again tho' - in a few clicks you sent me to information that I'd spent hours trying to find!

[izziebean]

When or if it gets approved here in the states Chicago charges 150,000 US dollars. Be careful when researching this treatment when it says stem cell treatment.....this is not the correct procedure. You want the stem cell Transplant with the chemo.

My charge in Chicago was $121,000, but my insurance paid the entire bill (I had already met my yearly deductible).

Dr. Burt's procedure in Chicago at Northwestern IS with CHEMO.

[chrissylou39]

That is absolutely wonderful news for you and your famil

Congrats to you!!!! What a wonderful feeling it must be for you and your family!!

I just want to know more about your experience. How did you do with the Chemo? That is my only fear about it. I have the paperwork for the clinical trial in order to start the process but I just want to know more about the chemo.

Please and Thank you.

Ok, Inmoni, this is Christine Shelton and i found out a year ago that I, too, had lesions on my brain as seen by my first MRI test! I see my neuroligist in another month but he doesn't know that I now have a cardioligist who put me in the hospital for 3 days regardless of my MS! He needed to help me with severly burned esphogus! That was a scare! Ok, if i stay on this site any longer today I will see all the things that I just not ready to read about!
Thanks to all!
Chrissylou39 Shelton

[shahnader]

SCT in Israel and Panama

Hi,
I've completed my SCT back in 2009 with Professor Slavin in Israel. His protocol uses your own adult stem cells (or Mesenchymal Stromal Cells = MSC) derived from your bone marrow, or stomack fat cells (Adipose tissues).
from about 400ml of your bone marrow derived from hip bone, MSCs are extracted and grown in lab for 6 weeks.
then they are injected back to you into via IT (spine) and IV.
No chemo is needed since these are your own cells and there is no rejection fear. if you have high inflammation prior to treatment, it is recommended to use cytoxan or Campath for lynfoabalation purposes 2 months prior to transplant.The cost back then was $30k. for one year post transplant i experienced lots of improvements. i had a thread with 52+ pages that spelled out everything but disappeared late 2010 ! moderators are trying to recover it. Slavin has worked with Burt (Northwestern) in the past and is senior to him when it comes to stem cell research.

ICM (international cell medicine) is another reliable choice based on feedback, who used to operate in Costarica but were forced out and are now operating in Panama. "Sandiego girl" (Holly) is very knowledgeable and is an ICM veteran. She also had a 52+ page long thread that disappeared ! They use a combination of your own MSC derived from adipose tissue, plus cord blood cells from matching healthy donors.

quick note on LDN (low dose Naltrexone) is an excellent drug for any autoimmune disease. its originally an addiction management drug at 50mg/dose which cuts down cravings by blocking opioid receptors, therfore triggering natural endorphin production by self three times more than usual. Endorphin regulates and strengthens (does not excite) our immune system by increasing TH-2 and other calming immune elements that are missing in autoimmune disease patients. The low dose is set to 4.5 mg. available from compounding pharms.

Best,
Shah

Hello jewlie!! You need to reach George!! he has a blog that he has set up. google "ms cure" He explains it all in GREAT detail. You can purchase it in Germany for 80,000 euros. (I believe) When or if it gets approved here in the states Chicago charges 150,000 US dollars. Be careful when researching this treatment when it says stem cell treatment.....this is not the correct procedure. You want the stem cell Transplant with the chemo.

George is amazing and will help you if he's able.

Right now I am trying LDN (I suggest trying all avenues before HSCT). LDN is a wonderful drug and safe. Do some research on LDN too.