Hi 
I have sca7 and i went to China for stemcells that came from donated umblical cord and placenta. It helps me. I have to repeat them.
I also live very healthy, no gluten no milk and no sugar / carbs.
But the most difficult is to have a positive mindset:))!
This is my personal experience that doctors cant help us. Its healthy food, excerzise and mindset that helps us.
This is me in China with a traditional chinese medicine doctor
Great that stem cells can help you. I hope once I can afford to try that kind of treatment.
Keep on going strong girl, I wish you all the best.
I looked into this both in China and Russia and discussed it with the neurologist in Southampton hospital. It sounds alluring and when faced with the diagnosis it's hard not to want someone to fix this pesky problem.
Stem cell treatment however will not change the faulty DNA that is the root cause of sca. I don't doubt you feel better after the treatment and my view is that this is down to the other treatments you had while in China plus the work you are doing to control your diet, plus you are being proactive about your situation. All of these are available to all of us, though we don't need to go to China to get Chinese medicine, acupuncture, massage etc.
The only medical way to 'cure' sca is gene replacement therapy, which is about ten years away, as currently they are still talking about the ethics of it and where to start.
I was very interested in a recent operation using sound waves in an MRI scanner to cure an arm tremor. Instant results and no invasive surgery with instant discharge the same day, so no hospital stay either.
Other treatments which may help alleviate symptoms and change our brain usage are undergoing tests in the USA, a device called the PONS machine. I'm attempting my own version of this and will report back.
Finally Dr Tom Clouse is coming over later this year and as a sufferer himself has some really useful ways of adapting and exercising to work towards being almost normal, assuming we ever were!!
Hope this helps. Sorry to have been absent for a while, just very busy making the most out of retirement and new grandchildren.
Nigel Heath
I know about genetherapy and i need to stay well until then!! I went to China for stemcells because i can get them there. The best would be if they can offer it in our countries. In Europe and USA its all drugs. I contacted PONS and they could not help at this point. I belive in sealfhealing and that we should give the support our bodies need for that.
Stemcells its natural and it helps:)!
I will look him up :)!! Thank you
Hi Maysan71
As far as Ataxia UK is aware, the Chinese scientists and clinicians (and those from other parts of the world), who are offering stem cell therapy treatment, are unwilling to publish any research papers to show what they are doing, or any proof of how it works, or any statistics on success rates. To be published in a reputable scientific journal requires papers to be peer reviewed by other expert scientists to validate their work. All the research that we fund requires the researchers to report to us, and to the scientific community, in this way; i.e. to publish their work in scientific journals. Sadly the stem cell treatment which is currently available is not substantiated by the type of peer reviewed scientific papers which are usual in any form of respectable treatment for medical conditions. Two years ago Ataxia UK hosted (on behalf of Ataxia UK and ataxia charities from Italy, Ireland and USA) the biggest ataxia research conference there has ever been anywhere in the world, with 320 scientists and 30 reps from patient groups. Not one paper was submitted showing results of a trial on effectiveness of stem cell therapy in humans. All the research on stem cells was on much more basic science as unfortunately there isn't any properly validated research showing clinical proof of effectiveness in people yet.
Our statement on stem cell treatment can be found here: ataxia.org.uk/health-and-tr...
I'm sorry not to be more encouraging and don't wish to decry your experience which you have obviously found very positive. I just want to encourage people who might be contemplating having this treatment to investigate it very thoroughly.
Best wishes, Sue
They have helped so many with ataxia at least 700 persons from all over the world. I have personally met 7 patients. There is no side effects, they are only using stemcells from medical waste. But you have to choose a good hospital. Since there is no money in this who would finance an expensive study?
This company Beijke Biotech is very open and they have one of the biggest stemcellsbank in China.
I would say stemcells is one of our safest oppurtinities we have until they can do genetherapy on us:))
My Neurologist from a large hospital in Australia were willing to finance this study in SCA to determine efficacy of this stem cell treatment.
The Chinese declined this.
Read what you want into this.
We dont know the whole story of this but stemcells prepared in the right way works!
Also taking care of our bodies in the right way works.
If it works so well why do they hide their results?
They dont hide it. I have done it in Beijke Biotech and they want the world to now so that more people can buy their treatments.
It is the medicine industry thats against it. There is no side effects and they are only using medical waste.
It is all common sense:)! Who gains but letting us believe only pills works.
Dear Maysan71
Thank you so much for sharing your experience with traditional Chinese medicine, I appreciate. Kindly can you advise me good doctor and hospital I would like to try.
My email is farah.hijra@gmail.com
Thank you ones again
There's interesting information re stem cells and MS on multiplesclerosisnewstoday.com
In the future, this might be the new norm for other neurological conditions but for the moment....
🤔xB
Trehalose support growing.
what if you cannot walk and you are told to take exercise
I can barely walk but I can dance!
