Post #2 - Getting the News

What eventually was diagnosed as Multiple System Atrophy (MSA) first became noticeable as an impaired gait in mid 2005, when I was age 61. At that time I was traveling frequently, making daylong presentations involving much standing. After flying home to SW Florida – often late at night – I began experiencing an unusual “weaving” gait when walking up the gangway and into the terminal. Initially, I wrote off the experience to travel/work fatigue, especially since the condition subsided after a day or two.

Throughout the remainder of 2005 and into 2006, the condition occurred more frequently, taking place at home as well as on the road. I found myself occasionally bumping into objects as well as people. I also experienced a balance-related fall from a pier into the water that dislocated my collarbone and injured some shoulder nerves and muscles.

In April of 2006, I retired completely. The condition, however, did not abate but instead has continued to progress to the current level, which will be detailed in my next post.

In mid-2006, it was determined my B-12 level was low and I began monthly vitamin injections. There was an opinion that this deficiency might be causing the erratic gait. By late 2007 when the condition continued to worsen, and other symptoms arose, I sought the opinion of a neurologist who ordered several MRIs. When the MRIs proved negative, he added high strength folic acid in an effort to improve the B-12 absorption. About 6 months later when the condition and associated effects worsened, I returned to the neurologist who suggested a second opinion from a facility such as the Mayo Clinic or Johns Hopkins Medical Center.

I selected Johns Hopkins in Baltimore, Maryland – for no reason other than my daughter lives nearby - and traveled there in November of 2008 where I was examined by Dr. Paul Dash, then Director of Hopkins’ Ataxia Clinic. After a thorough neurological examination and a review of my MRIs, his diagnosis was pretty definite: Multiple System Atrophy-C (the C indicates “cerebellar dysfunction” meaning the autonomic nervous system is affected whereas MSA-P involves predominantly “Parkinsonism-like” symptoms such as tremor and rigidity).

The diagnosis was sent to my GP and neurologist here in SW Florida. Both admitted they had little, if any, experience with MSA. They were very sympathetic and medically curious but admitted there wasn’t much they could offer except to treat the various symptoms as they arose. It was decided I’d schedule regular visits with my GP who would involve other specialists as needed. I currently see my GP every 3 months and have no appointments scheduled with the neurologist. I have also been seen by a urologist who has treated my urgency/frequency issues with partial success.

Since my doctors couldn’t offer much insight into MSA, I did like most people and sought information online. Needless to say, the findings were pretty shocking. Learning that there is no cure and a limited lifespan can really ruin your day.

It was at this point I found the Multiple System Atrophy Support Group shy-drager@yahoogroups.com which provides a forum for MSA patients and caregivers. This support group’s postings, while admittedly depressing to read at times, offer invaluable information and advice from people who have significant experience with this insidious disease. It was through this exchange of information I learned of stem cell therapy and eventually chose the XCell Center in Germany.

My next post in a few days will detail my current medical condition which I hope the procedure at XCell in September will halt or better yet reverse.