Saturday, October 31, 2009

Post 13 - 6 weeks after treatment at XCell

About six weeks have gone by since I returned from Germany and stem cell implantation. If there has been any improvement in my condition, I would describe it as ‘modest,’ at best. Fran and my daughters and a few friends have made comments such as, “You seem to be walking straighter,” “You look steadier,” “Your voice sounds stronger,” and “You look better than before.” The last comment may be because I’ve gained several pounds and even I have to admit I look less gaunt. Overall, I feel pretty well. I’m keeping up the exercises and waiting anxiously for SW Florida to cool off (still near 90 each day).

My main complaint right now involves disturbed sleep due to frequently waking up to use the bathroom. I’m averaging between 5 to 6 hours sleep each night with about 3 interruptions. As a result I usually need to nap in the afternoon and can't help dozing off and on starting around 9:30 each night. I told my urologist I was unhappy with the Sanctura he prescribed (the latest in a long line of similar medications). His suggestion was for me to consider a procedure known as InterStim which implants small battery powered electrodes (similar to a pacemaker) in the sacral nerves of the lower back which control bladder function. What I’ve researched so far makes InterStim look like a promising alternative to medications with only limited effectiveness.

Finally, I’m happy Pat and Eddie’s trip to the XCell Center went well. And good luck to Skeet as well as Tulio, who both will be heading to XCell in early November.

I’ll be back in about two weeks with the next progress report.

Wednesday, October 14, 2009

Post 12 - Four weeks after XCell treatment

Its four weeks now since I underwent stem cell treatment at the XCell Center in Cologne, Germany.

Fortunately, the fatigue and body aches mentioned in my last entry have subsided. Some of the other MSA-related symptoms that seemed to get worse right after the treatment have improved as well – namely balance, dizziness and sleep disturbance. All in all, I’m pretty much the same as just before the trip to Germany.

As noted by the doctors at the XCell Center, it may take up to six months before meaningful improvement is observed. To help things along, I’ve resumed my modest exercise regimen of stretches, weights, and stationary bicycle. I wish the weather here in SW Florida would finally cool down (its still 90 and humid during the day) so it’s safe to walk my overweight little dog, Chico.

I’ll post again in two weeks and will keep doing so every two weeks until all these MSA-related symptoms are just a bad memory. In the meantime – good luck to MSA’ers like Eddie (& Pat) who will soon take the trip to Germany in the search for a healthy, MSA-free life.

Thursday, October 1, 2009

Post 11 - Two weeks after XCell treatment

Today marks two weeks since receiving my stem cell implant at the XCell Center. At the beginning of this blog I promised to keep my comments factual and honest. Well, I must honestly report there has been no noticeable improvement in my MSA condition; in fact, a few of my symptoms seem worse than before. I think I’m still paying the price for being overly active during the trip to Germany. I walked too much and dragged around a suitcase and carry-on computer bag. Combine that with flight delays and hanging around airports and I’m not surprised by the subsequent headaches, neck and shoulder pain, and sciatica-like pain from my buttocks down both legs to my calves. I’m assuming this is all trip-related since it’s slowly lessening thanks to ibuprofen and hot showers.

What concerns me more are the worsened balance and gait problems, erratic sleep habits, constant fatigue, and pronounced dizziness when standing or walking. While I was prepared to experience some “down side” with the entire process, this is more than I anticipated. I suppose there is nothing else now then to just “tough it out” and hope to experience gradual improvement.

I do suggest to those considering stem cell therapy in Germany or elsewhere; remember you are there for a significant medical procedure and not to wear yourself out as a tourist – like me.

I’ll be back in two weeks – hopefully with a more optimistic report