Has anyone tried stem cell therapy?
My neurologist is pro stem cells and thinks it is the way forward, but thinks it won’t be legal here for years. His exact words were not to go anywhere dodgy, but how do you know if it’s a dodgy clinic?
So I was looking for recommendations. What clinic? what doctor? And what type of stem cell? I’m lucky that money is not an issue!
🤔At the moment you will find some people have tried Stem Cell Therapy. Some people find they stay the same, and others find their situation has worsened, but as yet it hasn’t actually been proven to help.
If your Neurologist is pro Stem Cell Therapy, and thinks it’s the way forward, he may have done enough research to give advice re your specific type of ataxia.
I looked into this about 3 years ago and found clinics in Switzerland and China, who claimed improvement in ataxia following stem cell therapy.
Prices of both were high, and while I too would have paid to stop this gradual deterioration I checked it out carefully and decided the improvement of patients was largely due to all the therapies bundled with the stem cells. Plus not to be sneezed at a large dose of placebo based on doing something.
If you go for this you need to check where the stem cells are from and was the donor properly paid.
While stem cell therapy works for many ailments it’s not working on the fault, which in SCA is genome based. Future cures depend on genome replacement work or possibly in the shorter term on dna blocking.
The biggest downer in SCA is the diagnosis, bringing with it a dashing of hope of getting better. Depending on your strain deterioration can be managed and slowed down by keeping fit and healthy in every other way.
There’s some ideas on Ataxiafightback.wordpress.com
All the best
Nigel
Stem cell therapy is big business in Mexico. Don't know whose, or what, stems cells are from. Many northerners go to Mexico for this therapy.
Thank you for the response.
My neurologist heads the Genome project and still says stem cells are the way forward. He also said don’t go to China, the Switzerland one is actually a Russian clinic.
I was looking at Panama as it uses the correct type of stem cells and has a long clientele, especially Hollywood Alisters, most recently Ozzy Osbourne for PD.
My Ataxia is undiagnosed but has a rapid decline, 3 years ago diagnosed and now in a wheelchair.
I m glad to hear about this therapy. But is it available in london ? My Doctor told me cure hasnt came yet
No it’s not available in the UK
Lucky you have money, doctor just wants it 
Have no seen any positive results reported anywhere.
My Neuro was willing to pay and send a nurse to China to observe treatment.
The Chinese declined to treat patient with observer
Says it all about STEM Cells
They want your money.
Charitable donation to legitimate SCA organisations would help
I have enough money not loads of money!
We will remortgage the house if we have to as we’re still both young (in our 40’s).
We do give where we can and at the moment have pledged a lot to the NHS.
We also have 3 children and my health to think about also one parent with P.D, one with cancer and one in a home to look after, we are fortunate but have worked hard over the years both coming from working class backgrounds.
Not everyone with some money has the capacity to give it away, as said before we have enough not loads.
I would advise anyone who is thinking about having stem cell therapy to read Ataxia UK's statement on it ataxia.org.uk/wp-content/up... and also this article which will give lots of cause for reflection brainandlife.org/articles/d...
Things are looking up
ataxia, as a way of life, ugh
Legs giving up - time for a wheelchair
Urinary incontinence (I know, nice....)
Hobbies
