Updated: April 30, 2020
While it is understandable that many MSA patients may want to try anything possible, stem cell treatments for neurodegenerative diseases are still highly experimental and The MSA Coalition cannot recommend them at this time. In fact, our scientific advisors who are expert in MSA do not recommend trying stem cells outside of a scientific protocol. This means that clinics around the globe that charge exorbitant amounts of money for “stem cell cures” are to be avoided. The vast majority of these clinics are not doing scientific studies.
How can you recognize a scientific study? Here are some questions to ask:
1. Does the clinic employ standard measures to record patient symptoms and changes in function before and after the treatment? Several standardized scales exist that would be very easy to apply, including the Unified MSA Rating Scale (UMSARS) and the Unified Parkinson’s Disease Rating Scale (UPDRS).
If no standard rating scale measurements are being done before and after treatment, this is a red flag.
2. Has the research been published in reputable peer reviewed scientific journals? Legitimate researchers welcome others to review and build upon their work.
If their work is not being published, this is a red flag.
3. Does the clinic charge an exorbitant amount of money to be involved in the trial? Usually clinical trials do not charge any money for patients to be involved and they may even pay for the patient and a caregiver to travel to the study or reimburse their out of pocket costs.
If the clinic is charging a large amount of money to be involved, this is a red flag.
Be An Informed Patient
Please be an informed consumer when you are exploring claims from companies offering stem cells, either overseas or in the USA. Check out this comprehensive information from the FDA that gives all the facts and guidelines on what questions to ask to help ensure you are making an informed choice.
https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm
Recognized scientific research
There are a handful of legitimate scientific research studies on mesenchymal stem cells (MSC) in MSA that we are currently aware of. Please refer to the MSA Coalition’s MSA Treatment Pipeline page for more information.
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FDA keeps warning about Stem Cell Therapies, then why few providers claim FDA approval to their therapies? Why the FDA doesn’t take action against them?
HELP PLEASE! Is there any update or treatment to help with MSA-P? Where in the world has the best and most advanced treatment I can take my mother? Tremor started 2011, diagnosed with Parkinson’s in 2013 at 69, is now 75yrs old with a diagnosis of possible MSA-P.
Medications do not work, lost 20k, no relief from shaking in addition to all other symptoms associated with the disease. Appreciate your advice.
Hi Mary, There are unfortunately no approved treatments for MSA. There are some clinical trials in progress for which she may qualify. Refer to the MSA Coalition’s MSA Treatment Pipeline page: https://www.multiplesystematrophy.org/msa-research/msa-treatment-pipeline/
My mother has Multiple System Atrophy. I did not see much information about this on this website, yet I have seen countless hospitals/clinics around the world from Switzerland, China, India, Thailand, to Bahamas offering stem cell therapy for almost a decade. Unfortunately, US is behind. I have seen and read countless positive feedback. And yes, there are some that didn’t see improvements. I believe stem cell is the future for this horrible disease. Sorry to sound blunt but medical advances does not revolve around US/FDA alone. There are smart humans in the rest of the world who may have found a more effective solution then the current ‘just take medication to help with symptoms and wait till you die’ approach.
My question is, there are 3 types of stem cell therapies for MSA (please put ethics aside for now, I just want to learn first):
1) Neural stem cells (NCS)
2) Mesenchymal stem cells (MSCs)
3) Human umbilical cord blood-mononuclear cell (hUCB-MNC)
My question is:
1) Which is the most effective?
2) Which is the safest?
3) Which is the most popular and why?
I would love if some expert can answer these questions.
I understand that your mother may want to try anything possible however stem cells treatments for neurodegenerative diseases are still highly experimental.
Our scientific advisors who are expert in MSA do not recommend trying stem cells outside of a scientific protocol. This means that clinics around the globe that charge money for stem cell “cures” are to be avoided. These clinics are not doing scientific studies. How do we know this? Because they do not use standard measures to access patient symptoms before and after the treatment. It would be very easy to apply the Universal MSA Rating Scale (UMSARS) however this is not being done. They also are not publishing their work in peer reviewed scientific journals. Note also that a legitimate scientific and government sanctioned clinical trial using stem cells will never ask a patient to pay any money.
Please read this information from the FDA regarding companies claiming to offer stem cell therapies.
https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm
You can read about mesenchymal stem cells (MSC) and MSA on our treatment pipeline page. Only legitimate scientific studies are posted there.
https://www.multiplesystematrophy.org/msa-research/msa-treatment-pipeline/pipeline-disease-modifying-treatments/
Some things to consider when looking at stem cell therapy of ANY type are: (1) What is the training of the provider (are they actual medical doctors with movement training OR some sort of practitioners like a chiropractor); (2) Exactly where are the “stem cells” coming from (is it a government approved lab OR some unnamed source like “healthy cord donors”); (3) Who is injecting you with the “stem cells”? (is it a medical doctor OR someone with a lab coat and name tag). (4) Will Medicare/Medicaid or insurance pay for it or will they charge you thousands of dollars for the “treatment”? Most research will not cost you and physical therapy will be paid for by Medicare or other insurance. (5) IS the facility a storefront or an actual medical facility? Beware of anyone offering you a “cure” for MSA as there are none at this time, and snake oil salesmen have been trying to sell “cures” or “treatments” for MSA for over 20 years and none have worked. A good movement disorder or dysautonomia specialist medical doctor can help you get the best possible treatment for the symptoms of MSA at this time.
Hey,
Thanks for reply.
I understand where you are coming from, but it feels like US is lagging behind on progress and the scientific world doesn’t revolve around FDA.
If someone has MSA, the US scientific world is pretty much saying ‘just wait to die’. That might be the case but it seems if that an option may exist is being talked about around the world (not just one country), then there has to be some credibility.
Few notes:
1) I never claimed stem cell as being a cure in the current state, but could improve the condition of the patient
2) Scientists exist in other countries also, and many are supporting stem cell (ex. China, India, Europe, etc)
3) Low risk. If you read most articles, the risk is low for stem cell therapy
4) FDA + Clinical Trials in US are known to be slow because of so many conditions. I understand these conditions are placed for the safety of the patient, but too much is counter productive. Many other countries do not have so many hurdles.
5) Clinical trials/Testing in other countries in India, China, etc is much cheaper than US, plus given the huge population much easier to find candidates for trials. Hence more studies, actualy stem cell therapies, and publications.
6) There are some publications, it’s just that FDA will reject anything that they don’t have control over. Example. goto https://www.neurogen.in/scientific-publications click on miscellaneous. There are publications on Mulitple System Atrophy and other similar neurological diseases.
7) Lastly, it’s not just 2-3 clinics involved. There are clinics in many countries from Europe to Asia to South America. They are all treating thousands and thousands of patients for MSA, Parkinsons, etc.
8) Mayo Clinic, which is ranked no. 1 hospital in the nation is doing exact stem cell treatment (MSC) that other clinics are doing already. Hence there is credibility if Mayo is doing it. Unfortunately, Mayo will take years and years for these trials and that’s not acceptable especially when other countries have been already doing it for years.
To summarize, the medical world should not revolve around FDA. FDA is just one group in one country. And in a country where not much progress is being made.
I would like to MSA community to look at the progress made in other countries also. That’s why medical tourism is so popular because people are frustrated with the US (lobbyist, no progress, so many FDA hurdles, the cost for trials, can’t find enough patients for trials, etc). And for many, the time is running out.
did you find some doctor to do this treatment?
I have visited a ‘infomercial about a stem cell “therapy” for everything from soup to nuts. They offer an unknown source of cells offered by a chiropractor who knew little about how the cells actually work and when questioned, he went on to people who were plunking down payments to staert an $8000 (at least) treatment.
They offer Physical therapy along with the “stem cells” and that can actually help many, many movement disorder patients, BUT Medicare will pay for PT and it costs you little or nothing. PT has been proven to help people with movement problems.
Then there is the probelm of getting the stem cells across the blood/brain barrier which real researchers look at and fakes just brush off. It is important to know exactly where the “stem cells” are coming from, how they have been taken care of, and who is admisitrating them. We heard of a cure for PD based on a Chinese srudy in the 1980]s with fetal tissue transplant which was actually tried in the USA in the 1990’s and it was found to help a few people for a short time which lead to the discovery of stem cells about 1999. There are some stem cell treatments for SOME diseases BUT not at this time for brain cells. Mayo clinic is actually doing real research on a stem cell treatment under real scientific procedures at this time, but it is in early stages.
Don’t be fooled, we have heard of cures for MSA since 1998 and NONE of them worked, in spite of what you hear. One man was declared “cured of MSA” about 1999 or 2000 at 3 years into “MSA” by taking him off all his meds and we found out he died within about 9 months FAR short of the average life of MSA patients. Many MSA patients live more than 10 years by following movement disorder doctors orders today and do not pay $8000 or more for treatments.
Stem cell therapies are approved by FDA, but only if cells are harvested from Bone Marrow, and individuals must consider treatments only from the approved providers.
Can you reference to fda approval
And is there list of providers approved from fda on stem cell therapies especially for msa