Saturday, August 8, 2009

Post #3 - My Current Condition

Currently, I would speculate I am in the early to mid-stages of Multiple System Atrophy (MSA). On a scale of 1-10 with 10 being the worst, I’d rate my current condition as a 4. I’m hopeful this “early stage” situation works in my favor with the upcoming stem cell therapy at the X-Cell Center. Instead of receiving the therapy as a “last resort” toward the final stages of the disease, perhaps treatment at an earlier stage will increase chances of a successful outcome.

As of August 2009, I’d describe my MSA related symptoms as:
• Gait disturbance – I rely on a cane when walking and find it more practical to use a wheelchair or scooter when visiting theme parks or museums (Thanks to Fran and my daughters for pushing me around).
• Balance related issues even when standing still – I sway from side-to-side and usually head for a wall or piece of furniture for support
• Occasional misplacement of left foot when walking – scrapes on floor
• Pronounced muscle weakness in legs after even moderate exertion
• “Coat Hanger” discomfort in neck/shoulders
• Urinary frequency/urgency (neurogenic bladder)
• Change in bowel function – I’m afraid incontinence is looming
• Decreased libido (ED) – one of the first symptoms several years ago
• Some loss of manual dexterity – I’m increasingly clumsy
• Sleep disturbance – occasionally act out while asleep
• Constant feeling of thickness in throat - voice cracks while speaking
• Blood pressure commonly on low side (100/70 avg) - occasional lightheadedness upon standing and up to 30 point drop in BP (orthostatic hypotension). Fortunately, it hasn’t caused a serious fall or faint yet. I frequently wear knee-high “pressure stockings” which seems to help
• Somewhat diminished mental acuity – increasingly forgetful
• Easily fatigued – most days need a short afternoon nap
• Minimal anxiety issues

A few other issues (MSA-related?):
• Constant whistle in ears – diagnosed about 8 years ago as Tinnitus
• Occasional vision problem in one/both eyes. Usually brought on by bright light or sun glare. Has been diagnosed as “silent migraine.” Consists of a V- shaped floater that affects vision and depth perception. Lasts about 30 mins.
• Osteoporosis – bone density test revealed below average numbers

Added 8/11/09 - When I was younger and needed to see a doctor for backaches, it turned out I have mild scoliosis (curvature of the spine). I mention this here because I have learned that several other MSA patients list having varying degrees of scoliosis. Could there be a connection between MSA & spine curvature? I wonder if a study has been conducted?

At this time, the three most troublesome symptoms I’d like to see successfully treated by the stem cell procedure are disturbed balance/gait, urinary issues, and orthostatic hypotension.

Current Medications:
• Monthly B-12 injections
• Folic Acid (to aid B-12 absorption)
• Sanctura (urinary issues)
• Actonel (to combat osteoporosis)
• Citalopram (anxiety control)
• Assorted OTC vitamins – multi-vitamin, fish oil, B complex vitamin

In a few days, the next blog entry (#4) days will describe why I choose the XCell Center for stem cell treatment.


  1. Steve: Thank you for setting up this blog. My wife has MSA and her symptoms are similar to yours. We will be following your journey with much interest.

  2. I just found out about your blog too and I love it that you're writing so much, this can really be a great resource! I just subscribed and will be following along too.

  3. Steve and Fran, My wife, of 40 years, Wanda is the MSA sufferer, dxd in Sep 08. The neurologist after 20 mins gave the diagnosis and told us to 'put our lives in order' - needless to say we were devastated. At that time Wanda was fairly independant. Last week we travelled to the Xcell centre for treatment by that time she was needing a wheelchair for

  4. Steve, Thank you for starting this blog - my family and I will be following your progress with lots of prayers for you, Fran and your family. My brother has recently been diagnosed with MSA-C and will be traveling to Germany for (hopefully) stem cell treatment early November. It was devastating news and reading about your journey has given me a ray of hope. God Bless!

  5. My name is Gerry Pottinger. I was diagnosed with OPCA last year. My neurologist doesn't want to call it MSA yet, but figures I might wind up with that diagnosis eventually. I think I'm already there, personally.
    I wanted to comment that I've had constant ringing in my ears for 25 years now, and when I asked my neuro if it could be related to OPCA, he didn't think so, put it down to noisy work environments(of which there have been several). You are the first MSA patient who mentioned tinnitus, so I'm intrigued. Were you subjected to a loud environment before the ringing began? Did you take up skeet-shooting, for instance?
    Thanks for writing this blog. I hope you and Fran are doing OK.

  6. Replies
    1. I too, have been diagnosed with msa and am having several of the symptoms. This is the first I have heard of tinnitus. I too am having extreme noise in my ears within the last year. I believe it is a symptom or at least very coincidental.