Has anyone had any experience with stem cell therapy? California stem cell treatment centers ?
For someone who has had Ataxia for 5 years or more, does ataxia continue to progress and do you continue to decline?
My aunt also has spino-cerebellar ataxia 2. Her neurologist told her she has reached her peak, she’s around 55.
I've had it (or at least was diagnosed) for more than 5 years - I was diagnosed almost 6 years ago (in February of '09). I can say that my condition has deteriorated slightly - but I think it varies for people - some go down faster, some slower. Over the past years my balance has gotten a bit worse where I use a cane if it is slippery outside (I live in Ottawa, Ontario, Canada so that's all winter :) ) and my speech has gotten a bit "thicker" - I slur things a bit more. But it's still not too bad for me - I know there are people who've gone downhill a lot harder than I have. I can't say for sure how things are going to progress for me, but I fully expect them to get worse as the years go by. That's why the wife and I (and a bunch of other people) are going to Rome in the fall of 2015 - I don't know when walking around to see things is going to be too much for me and we wanted to "cross Rome off the list" and see some of the things there!
T
Thank you for the reply, you’re the first ataxia patient I have heard from who has had stem cell. Sorry it did not help you. If this changes, would you post it loudly? It is so expensive,but if it works.
Thanks. Again for sharing
Ray
COREY CHANG said:
Yes, I have just this year. I was diagnosed with ataxia back in April 2014. But my neurologist thinks I have Multiple System Atrophy-a far more devastating disease that is terminal. I am currently taking a test to find out for sure. I received Adipose Derived Stem Cells from Stemgenenex in California in August, 2014. (This is where stem cells are taken out of fat in normally your abdomen, processed and re-administered back into you.) Although I can understand people are willing to take chances by exploring new methods for treating their disease, stem cells from this company did absolutely nothing for me and I spent about 16.5K on this worthless procedure-all out of pocket. There was a 10% chance that this wasn’t going to work for me and I understood that.But there were 5 other patients that went and none of them got any improvement too. This company is supposed to be the most credible stem cell company here in the U.S. So far, from my experience, their treatments don’t work and I could use that money to buy a good wheelchair now.
My advice to you is do your research well before jumping in. My ataxia has gotten much worse. Had I known it was going to be this bad, I would have made sure I had some money left for adaptive devices.
This company says it could take up to 9 months to see an improvement-I think they are just saying that. They also had two online articles that they successfully treated two people with ataxia. The results were quite remarkable and they occurred on the next day. I think those articles are fakes and 5 other patients with no improvement that I personally followed up with is good enough evidence that this treatment doesn’t work.
All The Best,
Corey Chang
I have had no experience with stem cells though I think the govenor of Texas, Rick Perry, had succesful treatment of some kind. recently (Not ataxia but other issues). I read this about two years ago in the New York Times. I am sure his office knows where he went..
I
Cory
Perhaps you could search on the internet for these two people who supposedly were treated successfully and ask them.
Barbara
My uncle had stem cell treatment about 6 years ago for sca1 it really seemed to help he had it done in China and went back 3 times I think to get it again, but after a while his symptoms worsened again. He is now fundraising for a new type of treatment that uses magnets placed under the scalp to energise the brain he has done a lot of research into it and feels that this will improve his condition immensely it’s also done in China x
The tragic part is if you spend yourself out and then a treatment is available you cannot then afford. Jerry
diagnosed 4 years ago. I have had symptoms for my entire lifetime. Mine is sporadic I can go weeks with no problems and suddenly I am bedridden for days. SCA is like eating an elephant. One bite at a time you just never know how the last bite will digest. You may have a severe reaction or a great week. Best way I can explain it.
don't feel bad. The cash or help will appear somehow.. Doesnt the President or some Foundation or sa philanthropy assist people in dire medical need? Re the stem cells which you received, you were just trying to improve your life. No blame, you tried.
COREY CHANG said:
I agree. I spent about 16.5K of my own cash on this worthless treatment. It's all I had. If a new treatment comes along, I won't have the cash for it.
Corey
Hi Corey, I have read up on this and by the responses see here, DONT WASTE YOUR MONEY AS THERE IS NO CURE. KEEPA A GOOD POSITIVE ATTITUDE
Dear All, I was diagnosed eleven years ago with ataxia and mine has progressed. I started using a cane about four years ago, as I started falling, hurting myself! I use to fall gracefully...,not so much anymore...,ha! But everyone is different for progression, depending on the type of ataxia they have. Although difficult, I keep exercising for strength and balance, as for me, it's so worth it! I want to keep my muscles as strong as possible, as I'm 60 years young. In terms of stem cell therapy, in my opinion research is in it's infancy. Have a wonderful trip to Italy BWGreen! I went 3 years ago and Rome was amazing! My cane and I walked all over...,ha! Kudos to you!!! ;o)
We're all looking forward to it! A lot of my family is going, as well as some friends, so if I start to topple there will be people who know that I can hold on to - instead of total strangers!
Hi Corey I understand not wanting to end up in a wheelchair as I feel the same. That terrifies me. I try to keep a good attitude thinking positive thoughts. It’s not easy remembering my normal life the way I used to be. I ask for help more now I try not to be too proud. It stinks. Then I remember the poor bystanders of the Boston Marathon. They have a tough road ahead. No legs. Then I look at me. It’s not that bad…
I have to agree. I had adipose stem cell therapy in FL in Sept. They said 3-6 mo, for improvement, but I haven't seen much of anything. Some people say my speech has improved. The only thing I do know is I haven't had an IVIG treatment since then. But I need something as the ataxia is getting worse. I think stem cells may be the only hope for regenerating growth in the brain but I don't know if I'll live to see it. I'm 61 now and diagnosed at 55.
Dear Soonergirl,
Just yesterday I asked my NYC neurologist (he's at NYU) about stem cells and he said, "we wont see the benefits in our lifetimes". (He's older than me-- must be 67 or 8.) I do continue to take IVIG with no pronounced benefits but with the assurance that it could be worse if I didn't. Dont know what 2 believe
soonergirl said:
I have to agree. I had adipose stem cell therapy in FL in Sept. They said 3-6 mo, for improvement, but I haven't seen much of anything. Some people say my speech has improved. The only thing I do know is I haven't had an IVIG treatment since then. But I need something as the ataxia is getting worse. I think stem cells may be the only hope for regenerating growth in the brain but I don't know if I'll live to see it. I'm 61 now and diagnosed at 55.
Our Purkinje Cells which process movement have some how been Atrophied...Serious research for a Stem Cell will commence
once the funding is there..Awareness FOLKS !!! Tell the world..This site should be also read by your family and friends and anyone
else you meet..
In Australia,I've been told by Professor Alan Mackay-Sim that no Stem Cell research is current for Ataxia...So don't be fooled into any
promises from so-called Stem Cell con merchants :-(((
..Hang in there people..
Dear Ran, Do you mean your ataxia is episodic? I have Soradic Cerebellar Ataxa and have symptoms 24/7..., ;o)