Tuesday, August 4, 2009

Post #1 - Introduction

Hello - My name is Steve S. and I am one of an estimated 75,000 Americans who have Multiple System Atrophy (MSA). Briefly, MSA is a neurological disease resulting from degeneration of certain nerve cells in the brain and spinal cord. Body functions controlled by these areas behave abnormally in people with the disease. These include the autonomic (involuntary) nervous system (which controls blood pressure, heart rate, and bladder function) and the motor system (control of balance and muscle movement). The cause of MSA is not known and, as of now, there is no cure and no significant treatment.

I don’t believe that last sentence is necessarily correct. There may be no significant treatment here in the United States but innovative medical efforts are underway elsewhere in the world that have shown promising results. In particular, I’m referring to the process where the patient’s own stem cells are extracted from his or her bone marrow, treated, and introduced into the spinal column with the intent to have them replace the defective MSA cells.

The purpose of this blog is to chronicle, step by step, my journey to undergo this innovative procedure at one of these stem cell treatment facilities - the XCell Center in Germany – and to report if it's successful in halting, or better yet, reversing this devastating condition. I hope my experience will be helpful to other MSA patients who are considering undergoing the XCell Center stem cell procedure.

In addition to my experiences with this treatment and its aftermath, I also intend to describe its effect on Fran, my wife of 44 years and my wonderful caregiver. We are taking this journey together.

In this blog I plan to include:

Information about me and the development and current status of my MSA condition
  • My experience to date with the XCell Center (contact, procedure, costs, travel, etc.)
  • General information about MSA - including a glossary of terms
  • Websites covering support groups, medical facilities knowledgeable in MSA issues, additional stem cell clinics, and other information of specific interest
There is another feature of this blog I hope will be successful, namely, an opportunity for the reader to contribute with either questions or comments. Yes, this is my blog but in reality it’s intended as a place for the exchange of MSA-related conversation. In particular, I’d like to hear from other MSA patients who have considered or actually undergone stem cell therapy either at XCell or another clinic.

To leave a remark or to view what others have said, simply click on the word “comment” at the end of each post.

One last comment: I have no financial or other interest in the XCell Center and plan to be objective and frank about my experience with them. If I’m unhappy or concerned about any aspect of my treatment – it will appear on this blog

Please include http://msajourney.blogspot.com/ in your Favorites and check back often for updates.

My next post, in a few days, will be a brief description of my MSA history.


  1. Steve - thank you for sharing your journey. I have a family member with MSA and I will follow your progress with great interest and hope. Best wishes to you and Fran.

  2. I too, thank you, for sharing your story in this format. I will look forward to reading it and will be hoping and praying for a successful outcome for you in Germany. My husband is the sds/msa patient, dx'd with a possible parkinson's plus syndrome in May 07 / dx'd msa in Jan 09. I admire your's and Fran's fighting spirit!

  3. Steve & Fran
    I understand and appreciate your thoughts . Like you My wife and I took the step in 2006 to head off overseas for stenm cell treatment in China. We returned again in November last year. I believe that Jill's MSA has slowed down and the symptoms while still there are less severe and in most cases quiet managable. We wish you the best in your new adventure. We have maintained a blogg site since 2006 - http://macandjill.createit.com.au
    I hoped that we could help , educate and raise awareness about MSA - in Australia.
    Again all the best
    Mac & Jill ( Australia)

  4. Thanks guys we will connect every couple of days
    to monitor your new blogs and review those who are sharing your journey A & L

  5. This is a wonderful undertaking on your part to chronicle everything for all of us as well as yourselves. Ron and I went to China in the summer of 2008 for Traditional Chinese Medicine and stem-cell injections in Beijing. We were in Beijing 7 weeks. Ron made pretty good improvement, which was short-lived due to UTIs after he came home. We wonder if it still didn't do some good, as he seems to have plateau ed. He has deteriorated in the past year, but maybe not like he would have. Hard to say. I'm interested in seeing how using your own stem cells works compared to the neural stem cells they used in China. Our very best to you all during this time. We will follow closely. Ron and Marilyn in Missouri

  6. Steve & Fran,

    Thank you for sharing this very personal information and education. I am hopeful for you and others who seek this treatment method, and that it will be successful. I plan to share your blog with my sister-in-law who was diagnosed with ms several years a go. Again, thank you both.

  7. Steve, I am from the MSA yahoo group and I am pleased to have you join those of us blogging about Atypical Parkinsonian Disorders.

    Congratulations on your new site and I must say, you are off to a great start! You can check out mine if you like by visiting:


  8. Steve and Fran, thank you so much for this blog. It is very imformative and so well written. I need to connect every few days to see your new writings because I love both of you. Fran, you are a very special person and I know what you do is out of love just like I did with Charlie. I pray your trip to Germany and meeting with "stem cells" will do wonders for you. Love, Doreen

  9. I was DX with Shy Drager Syndrome with Pure Autonomic Failure in 2001. I will be reading with interest and hope of your journey.
    Many thanks,

  10. Here I am again, reading this blog because it makes me feel closer to you both. My thoughts and prayers go with you to Germany. Steve you are a very brave man and one I am proud to be a friend to. Fran, let me hold your hand and be with you.
    God bless you both and bless those red blood cells with iron. love, Doreen

  11. We live in Oklahoma and will be traveling to the X-Cell clinic as well. Our trip is scheduled for October 2009. Husband's story is very similar to your own, though his DX is PLS (a slower form of ALS). I will be waiting, with great interest, to see yourreport on the procedure, and your outcome.