4 posts tagged “bladder problems”

“A Mile and a Candle” for World MSA Day

Posted October 3rd, 2011 by

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

Walk a Mile Today for World MSA Day 2011

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.


Everything about the Medtronic InterStim Therapy System

Posted May 21st, 2011 by

Looking for a place to research or share your experiences with InterStim Therapy side effects?  You’ve come to the right place.  At PatientsLikeMe, more than 125,000 patients are sharing their experiences with all types of treatments, including prescription drugs, over-the-counter drugs, supplements and procedures.

Manufactured by Medtronic, the InterStim Therapy System is surgically implanted device designed to help patients reduce the number of urinary and bowel accidents.  It is FDA-approved for patients with urinary or fecal incontinence who have failed to respond to, or could not tolerate, more conservative treatments.  How exactly does it work?  An implanted neurostimulator delivers an electrical pulse to the sacral nerve, which controls the bladder and anal sphincter.  This pulse is sent via a handheld programmer.

During the clinical trial that found InterStim Therapy could reduce bowel accidents by half (and in some patients, restore full continence of bowel movements), reported InterStim Therapy side effects included infection, pain at the site, “pins and needles” and the neurostimulator breaking through the skin.  But what about in the real world?  That’s where PatientsLikeMe comes into play.

According to the six treatment evaluations of InterStim Therapy submitted by PatientsLikeMe members (10 of whom currently report using the device), reported side effects included “bladder problems,” “annoying sensation” and “bowel incontinence.” Three patients rated the side effects as “Mild,” while three others reported no side effects.

Curious to hear more?  Here’s what three patients, all of whom report multiple sclerosis (MS) as their primary condition, had to say in the freeform section of their evaluation:

  • “It has helped me! Aside from the surgery pain and the seizure I endured, I would have it implanted again.”
  • “Taking the InterStim was an act of desperation. I was about twenty when my bladder started to fail. The leaking and frequency still continue to be a problem.”
  • “The impact this device has had on my daily life is incredible. I truly feel this is the best thing I could ever have done for myself and my MS symptoms.”

JOIN PATIENTSLIKEME TODAY

Have you been implanted with an InterStim Therapy device?  Join PatientsLikeMe and add your experiences with InterStim effectiveness, side effects and more to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.