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.
• 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.