My mother is 73 and has had all the symptoms of Ataxia for the last 5 years. We have worked with a private and now NHS neurologist but she is still undiagnosed with which type of ataxia she has.
I am considering taking her for stem cell therapy to improve her mobility and quality of life as much as possible, but find there aren't any viable success stories out there . Just a great deal of promotional content from the stem cell clinics in places like India and Mexico.
Does anyone have any first hand experience undergoing stem cell therapy for ataxia?
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raj888
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I haven’t had it, my husband didn’t want me to take the risk. I did a lot of research and my neurologist here said it’s the way forward but there’s little evidence which is why it’s not available yet, clinical trials are not showing good enough results and don’t go to a dodgy clinic especially Russia or china. His words, his patients have not had great success with it and one died as a result but a decade ago when it was new. USA have recently legalised it for joint injuries so it is coming.
In my research the best clinic was Panama, who turned me down, and they were trying to get the doctor from Cayman Islands the second best which I was going to try.
It’s a lot of money for something not yet proven, there’s some great testaments though, including Mel Gibson for Panama on YouTube. I have yet to find one specifically for Ataxia though, from what I read it works better for autoimmune ataxia’s.
I think if you have the money it’s worth the risk especially if you’re older. I’m in my early 40’s and have three kids living at home and depending on me, my husband felt this was too much to risk.
I still do not fully understand as they treat other Neurological conditions like Parkinson’s. At the time my Ataxia was not diagnosed with any specific cause which was the reason given because they couldn’t guarantee any improvement. It does not cost anything to apply and you are under no obligation to go.
Most people are aware ….At the current time..Stem Cell Therapy is not a viable treatment for any of the Ataxias. At best ..it will not worsen symptoms.
Stem cell therapy and ataxia
Possible benefits of stem cell therapies have been highly publicised in the press, and there are clinics around the world who claim to offer stem cell therapy to treat a number of conditions, including ataxia. We believe that any treatment should be offered on the basis of the results of rigorous trials in patients that assess both the risks and benefits of the intervention. However, unlike the treatments described above, stem cell therapies have not yet been tested in this way in people with ataxia.
Stem cell therapy may one day be a reality for ataxia, as it is now for blood cancers which bone marrow transplants can cure, but the science for neurological disease is not at that point yet. Scientific research, in general, is a long and involved process. Even though we have a greater understanding of the disease mechanism for the ataxias, translating that into a cure with stem cell therapy will take more research. We believe there is promise for stem cell therapies in some neurologic disease, but for now patients need to know that currently there are no stem cells that can fix the brain, improve ataxia, or prevent the worsening of ataxia. Some stem cell therapies may even worsen ataxia or cause other unanticipated serious health consequences. Another consideration for a patient electing to try unauthorized "stem cell" injections is being disqualified from future trials of authorized disease modifying therapies for ataxia.
I think wobbly bee has covered this pretty well. I investigated it early in my ataxia journey and even set up an appointment with the neurologist in Southampton to ask about this.
My conclusions were that stem cells are the wrong cells to work on. Ataxia is mostly a dna problem and future ‘cures’ will come from dna research for a more common and sexier condition.
Spend the money on gadgets and home alterations that make a real difference. If needed on a wheelchair to keep the world from closing in.
Thank you everyone for your responses. There is definitely a lot to consider as I research options for my mother. It has been encouraging to see the effects of stem cell therapy on MS patients, hopefully one day there will be more done for ataxia patients too.
Yes others have said correctly. I recently listened to a NAF meeting on research and the stem cell question came up. It was made clear that stem cell research both in the US and UK, so both reputable, was still in the lab stage. Maybe a while yet. Although Parkinsons and MS with ataxia are all neurological, so they effect the neurons in the CNS, they all damage the brain differently. Yes it's hard to understand but the neurons and synaptic gap is effected differently. Even the different types of ataxia effect the CNS differently.
Does your mum have hereditary, acquired or autoimmune ataxia. If autoimmune then I would simply suggest she tries a gluten-free diet. There is no medication involved just stick 100% to diet. Just 2 weeks or 1 month and see if she feels any different. If so then a while longer, and check with your neurologist. A word of caution though. Not all medical professionals believe that gluten can play apart in ataxia
There lots of research to read, look at PubMed and research that Sheffields Professor Hadjivassiliou has done.
Thanks Penelope! Will definitely have her try coming off gluten, right now we are suspecting Ataxia but her brain MRI is clear, the next check will be to do a private gene test (as her neurologist states it isn't genetic and won't send her for the test), and then a test for gluten issues.
Yes you are right, you need to be eating gluten to get the corect result for GA but consideration needs to be taken into account for the waiting time for an appointment at Sheffield. The lab there is the only one in the country to test for TG6 antibodies. Desperation for some calls for desperate measures.
My mother was diagnosed with SCA1. She went to a hospital in Thailand for stem cell therapy about 8 years ago, at a cost of about £25,000 plus flights and accommodation (for mum and my dad). They were there for about two weeks. There were other treatments included, oxygen therapy, physio, etc,. The doctors and nurses were lovely and gave my mum lots of attention. However, there was definitely no improvement in her condition at any time. If anything, I feel that she declined more quickly after the treatment. She also had continual dizziness, which she did not have at all before the treatment. The only bonus was that mum has saved my sister, who also has this condition, from making this epic journey, wasting a lot of money and having false hope. I will always be grateful to my Mum (and my Dad) for doing this.
I am sorry to put a dampener on things. You all really need some hope, but I had to let you know my mums story for you to make a better informed decision.
My mum passed away last year of something that was unrelated to SCA1 at the age of 75. Her lungs were scarred from taking low dose antibiotics long term. She passed away of pneumonia.
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