There seems to be no hope given by any Neurologist I have consulted in the US till today. The best they can offer is chewing on beetle nut (i couldnt beleive it), to drinking coconut oil, or ingesting 3000 mg of CoQ10 every day, all veiled in logically explanations. Anyway I thought i was being treated as a guinea pig, with various tests done on me each time.
There came time with me no longer able to perform my work(self employed). I have a family to look after have to put my kids through collage, and here I am at 45 ready to go on Uncle Sam's care. I had to relocate and I have been drawing on my dwindling savings. The only thing we are taught in our country is to be arrogant, we are the greatest and nothing is better than us. I was desperate to discover what the rest of the world thought about Ataxia.
I found several websites, especially in the far east that were recognizing Ataxia as a recently incurable condition that had the only hope in Stemcells. China has the largest no of websites, South Korea is another place. Communicating is a problem here.Then I hit upon India. Communicating is no issue here as they speak English too, and they are also cheaper than the rest. I have spoken to three places, but a gem of a place is a research institute with their own hospital, treating only neurological patients. They claim to have treated some 1,500+ patients successfully including many Ataxia patients. Please check this place out and post your impressions on it. I have an appointment fixed for December/Jan.
I value your impressions on this place "NEUROGEN", based in Navi Mumbai, India. The treatment costs under $12000 and not very much more than locals as they include pick up drop off at Airport for foreigners.
Sam as far as i know these places are fake! They show improvement because of the intense pt they do on a daily basis. Please do not put your hope in this. As far as I know the family I have living in India have not heard anything (I am an indian lady aged 46) and I haven’t risked it! Stem cell is being researched but does not yet work or they would be doing it in America or England.
You have a point though have you gone to their website?. It looks impressive and gives plenty more information than a lot of other sites. When I called I was put through to a Neurologist who could explain what was going on. It seemed to be credible. They have researchrch papers and books published. All this info on website. Also links to videos of their patients.
Sam i have been on the website as well and it does look impressive. If they were real would the NAF be promoting it?Would we not be hearing more people talking about it?
$12000 is a lot of money. I would want a cast iron guarantee of 100% success for that sort of money. I couldn't see where they listed any of their doctors?
From what I can understand stem cell treatment is still very much in the research stage.
I was under the impression that Stem Cells were not a cure but rather a regain of function due to the Cerebulum being regenerated and the Spinal Column being able to transmit better. However it is a band aid that does not get rid of the root cause. The affected cells are still there and will continue to degenerate. Not knowing your type of Ataxia is it maybe not correct of me to make such an assertion, but please remember that clinics like this rely on monies to exist. I have never heard of anyone being cured of any form of Ataxia using Stem Cells. I prefer to wait until RNAi is ready for prime time. Then they will be able to remove the root cause, the specific allele that is causing the repeat.
That is my lay mans view of things. Not being a Dr I may have been inaccurate in places but I think that the gist is there.
Of course, the website looks impressive, and of course the claims are impressive, too. The website was created by those selling this treatment to consumers. Often, the slicker the website, the more suspect the treatment. You are exactly the type of consumer that is vulnerable. You have not found solutions for your health problems and badly want to find a cure. If you need to go all the way to India to get this treatment, that should tell you something. If it were effective, as demonstrated by evidence-based clinical trials, the FDA would have approved it, and your doctors would be signing you up. Talk to your current doctors about this treatment, and I am guessing they will attempt to dissuade you. South Korea, China, and India all have in common poor regulation of treatments and little accountability.
I also note that the "Ethics" page of the website states that Neurogen is permitted to offer "unproven" treatment if no other effective treatments have been found. So, in a way, they are admitting upfront that their SCT has not been demonstrated to be effective. It is not risk-free, so it is not a "nothing to lose" situation. There is a fair bit to lose, both financially and healthwise.
I went to an Ataxia support group and they also thought StemCells were an answer. The doctor there said they were all fake. There is no magic bullet. Save your money. This is the equivalent of shredding your money and flushing it down the toilet!
I went to an Ataxia support group and they also thought StemCells were an answer. The doctor there said they were all fake. There is no magic bullet. Save your money. This is the equivalent of shredding your money and flushing it down the toilet!
NOOOOOOOOOOOOOOOOOOO.......Stem cells cannot and do not work....yet.. It is still a long way off. Outside the US it is not regulated,, and it's a marketing free for all to desperate people. Many have spent their life savings on this, and have nothing to show but severe regret...STEM CELL TREATMENT DOES NOT WORK FOR ATAXIA!!!!!!!!!!!!!!!!!!!
it's a harsh reality....DON'T DO IT.......Testimonials are fake, scripted, and done before the patient leaves the facility. I challenge you to verify ANY of them. All improvements last a very short time, and have absolutely NOTHING to do with stem cells. If it worked, don't you think that thousands of us would be doing it?
Stemcell therapy the solution for ataxia, yes probably..ONE DAY. The brain is a very complex region. My neurologist told me that all researchers/scientists of the cerebellum are in close contact, worldwide. IF something comes up it will probably be in the UK is my good guess. Ask yourself: why would a country as India already have the 'cure', not sharing their knowledge. Now WHY is that. Sounds kinda experimental to me, wanting to use the word fishy actually. So think TWICE before you dive in.
I sense your desperation, but this is basically not the best foundation for a wise decision. Hoping for something that is not there yet is a 'killer' and only shatters the strength of our minds. Focus on the can do's and don't linger on the ones you can't anymore, which will only sadden you. So STAY strong, the ONLY way to deal with this ride, I assure you. Hugs from Holland, Elle.
Like the first poster, I have family in India. My family in India are doctors - psychiatrists and neurologists. When I told my cousin (a neurologist) that I have ataxia, she was very sympathetic, but as I mentioned on another thread, she didn't say "hey, we have some really promising experimental treatment over here, you must come and try it".
Beyond that: I am an epidemiologist. I have just now read the papers on Neurogen's website that seemed most relevant to SCA (i.e. incurable neurological conditions). The thing that struck me immediately was that a) all the treatments they mentioned were followed up by extensive physiotherapy and other neuro-rehabilitative treatment; and b) there was no control group in the studies. What that means is that it's entirely possible that any improved quality of life patients' experienced was due to placebo and/or the rehabilitative treatment, and had nothing to do with the stem cell treatment.
The point of the papers generally seems to be to prove that it's safe to do the treatments they propose, i.e. it's not going to make any patient any worse. That's an important step on the path towards proper clinical testing, but it's not proper clinical testing.
Those papers therefore provide pretty much the lowest type of evidence of treatment effectiveness. If I were writing a systematic review of the evidence provided by Neurogen that stem cell treatment can cure SCA (or indeed any of the other conditions they claim to treat) I would say there is exactly ZERO proof that their stem cell treatment has any effect on neurological conditions.
I know you really, really want this to be the answer, but please trust me when I say it's not.
There is some "Eastern" treatment that may help, but it's not medical. Lots of people find meditation and/or "mindfulness" help them accept things/changes in their life over which they have no control. But you don't need to spend $12K or go to India to learn either of these things.
I am dubious about stem cells.I am going to wait until there has been more research and to see it mentioned as a cure by the major suppport websites.In my case Ataxia UK.Let me know of your progress.Many of us would love to know if something helped.