NOTE: I get a LOT of comments on this post that are essentially "commercials" for stem cell treatments. THESE WILL NOT BE PUBLISHED! I have no desire to turn this into a commercial site. If you read what I have written, I do not believe stem cell treatment is appropriate or will help with MSA.
Before I get into the topic I again want to express my astonishment over the hits this site is still getting, as well as the comments and emails I get. To say I enjoy them would be wrong, because it usually means I am "meeting" another person suffering with MSA. However, it is always good to hear from people. I am grateful when this site is mentioned as offering some support and/or solace. Please feel free to comment or contact me.
The second most read post on this site is the one I did about stem cells (fyi, #1 is the intro page) If you have not read it, here it is: http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html. I promised a follow up. I have been doing research and have contacted many people to gather as much information as I could. I do not mean for this to be the definitive stem cell comment by any means, but I do hope it will provide some support for those looking at the treatments. At the end I have placed some links you may find helpful in your own journey.
I have been argued with over my first post and the conclusions I came to that stem cell treatments for MSA, at least at this time, are a waste of money. I am sad to say I can find nothing to change my opinion at this writing. Stem cell treatment for MSA (or other alphabet diseases, especially of the CNS) is not proven to offer any lasting medical improvement, and has caused harm to some patients with complications such as infections, immune system responses (rejection), etc. There are inherent dangers with any medical procedure. Even a simple vaccination injection can be very dangerous in certain cases due to allergic reactions. It is rare, but it happens. To pay tens of thousands of dollars for an unproven, potentially deadly procedure with no proven record of safety or success is not a good bet, at least in my opinion.
I understand the allure of stem cell treatment (or other treatments with promises of curing or reversing these terrible diseases that standard medicine cannot help with). To accept that there are diseases that modern medicine cannot treat, much less cure, is very hard to do. My wife and I talked about stem cell treatments and other alternatives a lot. That is where I first became aware of the problems and dangers. I did hours and hours of research. I "spoke" to (either in person, on the phone, by email, or by mail) anyone that I could get up with that I thought had any knowledge of stem cell treatments. I mentioned in a post I did earlier, I even got two Chinese "doctors" (in quotes because one of them told me he was not a medical doctor, the clinic just referred to all their clinicians as "doctor") affiliated with a stem cell treatment center in China to tell me they would not use the treatments on their loved ones - it was too dangerous and did not work.
I do believe stem cell treatment offers a great resource for the treatment and possible cure of many, many diseases. I also believe we are many, many years away from this. I also believe that the treatment of CNS alphabet diseases may be the last frontier for these treatments, outside of spinal cord injury (there is a lot of promise there). Due to the fact that most of these alphabet diseases are not understood from a pathology or systemic standpoint, treatment is a long way off. The good news? A long way off in today's world can be much quicker than in the past. Advances in medical science are happening every day. There are discoveries being made as I write this. Maybe one of them will be able to offer treatment and/or further understanding of these diseases. For now my advice would be to stay away and save your money. If you are offered a chance to engage in stem cell research from an accredited research facility, go for it. They are probably not to the stage of a cure, but you may advance the field of study and treatment.
I promised links. Rather than clog things up with a lot of them, I have two. The first is for the ISSCR, the International Society for Stem Cell Research. They have a great site with a lot of information about what is going on in the stem cell research world. You can find their site here - http://www.closerlookatstemcells.org/. They also have many links there for you to continue your research. The second link is one I think I shared before. It is a link to a site that offers all the approved medical trials and studies going on in the U.S. It covers all diseases, but can be searched by specific disease. I have the link to the MSA and related studies. The link is - http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open .
As always, have the best day you can have.
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My husband died on New Year's Eve 2011 from MSA. We knew this was going to be his last Christmas. He was unable to move, wasn't eating or drinking, and spent 99% of the week between Christmas Eve and New Years sleeping. Our daughter and her family came for Christmas and he opened his eyes twice: once when they arrived and once when they left. He seemed to be drinking each one of them in as he looked at them. Three years ago he was diagnosed with Parkinsons and the neurologist changed the diagnosis to MSA a year later. He fought a brave battle. He adapted to each limitation with courage, but also with an appropriate amount of depression over whatever loss he was experiencing. He was a brilliant man...a retired Rear Admiral (submariner) and business exec. and one of the most insidious aspects of this disease is having the body betray the individual with the mind remaining intact. We must raise awareness about MSA!
ReplyDeleteI appreciate your comment. I am not saying stem cell therapy is not (or especially WILL not be) a wonderful scientific advance, and may offer cures for diseases that as of now are uncurable. I am saying that it appears from evidence that stem cell therapy is not a treatment for MSA, at least at the present stage of development.
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