Post 23 - Six month summary

It’s been six months since I traveled to Cologne, Germany for stem cell therapy at the XCell Center. I decided to wait a full six months before summarizing whether the therapy had any effect on my condition. The six month decision was prompted by the statement from XCell that any results, if they occur, may take six months or more to materialize. That said; let me try to sum things up.

In August of 2009, in blog entry #3, I listed my condition at that time, a month before undergoing the stem cell procedure. Perhaps it would be best to make some before/after comparisons to help judge the success of the therapy.

Overall, I still feel I’m in the early to mid-stages of MSA. On a scale of 1-10 with 10 being the worst, I continue to rate my condition as a 4. Individual comparisons are as follows:
• Gait/Balance – I think my ability to walk straight (or even stay upright) is slightly worse than before – especially if I try to turn too quickly. Fortunately, I haven’t fallen yet, but have come close several times. I continue to constantly rely on my cane. I’ve found that certain surroundings or situations affect my balance more than others. For example, big stores with high ceilings really throw my balance out of whack as does trying to walk sideways to my seat in a theatre. I’ve also found that anything more than a small glass of wine really messes up my balance. And, I’ve learned something unusual about walking – the faster I walk, the straighter I go. Slow down or stroll and I’m all over the place.
• Occasional misplacement of left foot – Before, I would sometimes drag or scrape my left foot on the floor while walking. Haven’t done that in months.
• Leg muscle weakness – My legs still become “wobbly” and tired after exertion, especially if some bending or squatting is involved. No worse than before.
• “Coat Hanger” discomfort in neck/shoulders has intensified somewhat. It’s more like a “tingling” sensation rather than pain – localized in the rear-center of the neck. Hot showers and a neck massager really help.
• Urinary frequency/urgency (neurogenic bladder) - Some modest improvement here. Don’t have many “urgent” episodes. Frequency a bit less often too. Still need to get up several times a night, even with a nightly Sanctura capsule.
• Bowel function – Thankfully, not a serious problem.
• Loss of manual dexterity – about the same – I’m still frustratingly clumsy.
• Decreased libido – No change
• Sleep disturbance – This is one area I’m happy to say is no longer an issue. I don’t sleep for that long (average – 5/6 hrs) but I’m no longer “acting out”.
• Fatigue – Not quite as bad as before – still take an afternoon snooze, but I’ve always been a “napper” which is probably a holdover from my police days when shift-work forced one to grab a catnap whenever possible.
• Feeling of thickness in throat – Once in a while my voice cracks while speaking and throat feels congested. The problem responds favorably to speech exercises.
• Word enunciation – Recently I’ve developed a problem pronouncing certain words, especially multi-syllable ones. Feels like the muscles in my lips and mouth won’t form correctly. People have no trouble understanding me – but I can clearly feel the difference.
• Orthostatic hypotension – There’s been significant improvement in the big drop in blood pressure I experienced before the treatment. My pressure used to drop 30 or more points upon standing – now it’s no more than 20 points and I’ve had very few episodes of dizziness. I have been wearing knee-high pressure socks more often which probably helps.
• Diminished mental acuity – This is a hard one to describe. I just don’t feel as “sharp” as I used to – especially in decision-makings situations. This was becoming apparent before the procedure. I have a doctor’s visit in April when I’ll ask about reducing the strength of the anti-anxiety medication (citalopram) I began when first diagnosed with MSA in Nov 2008. I think there might be a correlation between this drug and my mental “sharpness”.
• Temperature sensitivity - This is something I haven’t mentioned before. I’ve become much more sensitive to temperature extremes – especially hot, humid weather. I’ve learned not to do any exertion outside here in SW Florida if it’s over 85 degrees – which it is practically six months a year. I came close to heat stroke before I realized my internal body “thermostat” is malfunctioning.

Before stem cell therapy, I listed my three greatest concerns - and the ones I hoped the procedure would improve: 1) disturbed balance/gait, 2) urinary issues, and 3) orthostatic hypotension. As of today, I will replace orthostatic hypotension in the #3 spot with concern over voice/throat-related issues. I really hope that’s a problem that doesn’t worsen.

Finally, how do I sum up these last six months and the overall result of my stem cell therapy? First and foremost, I’m glad I found the XCell Center and underwent the procedure. At a time when I was being told there was really nothing available to treat multiple system atrophy – the potential benefits of stem cell therapy offered a small ray of hope in an otherwise bleak scenario. XCell didn’t claim they would cure my condition – but would provide me with the latest in regenerative technology. I’m confident I made the right choice.

While initially I was hoping for immediate, dramatic results, it soon became clear that any positive effect would be of a gradual nature. That’s why I can’t be sure how the procedure has influenced my overall condition – no more than I can predict what I’d be like today had I not undergone the treatment. Simply stated, in some areas I’ve improved – in others I haven’t.

There’s another aspect of this entire procedure that has to be taken into account. Due to a longtime low blood count, the number of stem cells taken from my bone marrow was also low - 700 thousand versus the normal 2 million or more. If my results don’t meet expectations – that deficiency might be the cause (XCell told me of this before the procedure).

To those of you trying to decide whether stem cell therapy is right for you – I hope I’ve provided a helpful, firsthand account of what the treatment actually involves. I plan to continue these posts, but on a monthly rather than bi-weekly basis. I’m still confident that stem cell technology will eventually unlock the mystery of this debilitating disease and allow all of us to enjoy long and active lives.

Good luck to each of you. Don’t hesitate to contact me if I can answer any other questions.

Post 22 - Twenty-four weeks after treatment

Another two weeks have sped by as I approach the six-month milestone of my stem cell treatment at the XCell Center. Nothing noteworthy has occurred during these last two weeks but I would like to make an observation.

In Post 19 – I mentioned how my voice improved (stronger, clearer, etc.) after presenting a weekly class in an Elderhostel-type setting. Based on that, I speculated that continued exercise of any type might just help the body slow the progression of this disease. I bring this up again because now that my class is over and more than a week has gone by – I have noticed that my voice is less “agile” than it was while still teaching. It seems a little weaker and I’ve already experienced more “throat-clearing” episodes.

What’s my point? The saying “use it or lose it” may especially apply to those of us with MSA. The longer we’re able to challenge our bodies (and voices) with safe, beneficial exercise, the longer we’ll be able to experience active lifestyles. So, if you’re anywhere near my home here in southwest Florida and you hear sounds similar to a trapped animal – don’t be alarmed – it’s just me singing along with Elvis.

I’ll be back in two weeks with a summary of my entire XCell experience at the six-month mark.