Post 17 - Twelve weeks after treatment

I’m a few days late with my regular two-week stem cell treatment update but things have been a little hectic around here. First, Fran & I have gone to contract on a condo unit not too far from our current home (one of my previous messages mentioned how it was becoming more and more difficult to maintain a house & property). Second, we’ve just finished a 3-day garage/moving sale which got rid of a lot of stuff that didn’t need to make the trip to the condo (rakes, shovels, tools, and much more).

Preparing for and carrying out the yard sale involved much more than the usual physical activity on my part. First came bringing everything out to the garage, then displaying and pricing each item. Next came 3 days of talking with “customers” and making sure everything went well. Finally came the cleaning of the garage and trip to the recycle center with the sad, unsold remains.

So, understandably I’m a little more “wobbly” than usual and my legs are still somewhat fatigued from all the activity, but overall I came through it better than I thought I would. Can I definitely say the stem cell treatment – now almost 3 months in the past – played any part in my ability to get through these events or would it have been the same without the treatment? I guess we’ll never really know for sure. That’s a mystery that remains to be solved. But, all things considered, I feel pretty good.

Since I don’t plan another update until early January – Fran and I would like to wish everyone (over 3000) who have visited this blog our sincerest best wishes for a joyous Holiday Season. May the New Year be one of peace, happiness, and good health. And to those of you joining me on this journey – let’s hope 2010 is a year of positive breakthroughs against this ridiculous disease.

Post 16 - Interesting newspaper article

I just came across a newspaper article that might be of interest to people contemplating XCell stem cell treatment. It describes the experience of a Nova Scotia MSA patient who underwent the procedure. The article is dated 10/13/09 so the information is very current. The link to the article is: http://www.southshorenow.ca/archives/2009/101309/news/index016.php

Post 15 - Ten weeks after stem cell treatment

It seems like only a few days ago, but it’s actually been ten weeks since my trip to Cologne, Germany and stem cell treatment at the XCell Center.

Until now, I’ve reported no noticeable change in my overall MSA status. I think I’ve basically said that I have felt no different than I did before receiving the treatment.

That statement was accurate until just a few days ago - when I experienced a feeling of subtle improvement. Sure, I still walk unsteadily, slur some multi-syllable words, and have a “thick” throat after talking loudly (I teach an Elderhostel program and my voice and throat are affected after an hour or so) – but recently these and other MSA symptoms just don’t seem as pronounced. Like I said, it’s a subtle change but one I hope is just the start of a lasting improvement.

So, I’m cautiously optimistic about my current status – cautious because it’s too soon to know if it’s real, but optimistic that it may be the start an upward trend.

Finally, I’ve added a link to the blog of Mariko S. who is considering a trip to XCell. She joins Eddie, Skeet, and a growing list of others who have or may soon begin a stem cell segment on their MSA Journey.

Post 14 – Eight weeks after XCell treatment

Eight weeks have passed since my stem cell therapy at the XCell Center. Frankly, there’s been no noticeable improvement in my overall condition. Still walking like a drunk, sleeping too few hours, having difficulty pronouncing multi-syllable words, and occasionally feeling like my throat is full of cotton causing my voice to break up. Tried to do some lawn & shrub clean-up last week (it’s finally cooled off some here in SW Florida) but my legs told me to pack it in after little more than an hour. That convinced me it’s time to look into condo living

I’ve decided against the Inter-Stim procedure mentioned in the last post. I found it’s used most often on people who have more advanced urological problems than I. For now, I’ll stay with the Sanctura medication and hope for the best.

On the bright side, there’s been no worsening of my condition. Aside from asking Fran to do most of the driving – I can’t complain.

Finally, I was happy to hear XCell patient Skeet produced 6 million stem cells for his treatment. That has to be some kind of record!

See you in two weeks with the next report.

Added Nov 16: Forgot to mention that I've added links to the blogs of two others who recently underwent XCell stem cell treatment. Those links can be found on the left column of this page under "XCell related blogs"

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.

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.

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

Post 10 - Summing Up the XCell Experience

I am writing this summary just a few days after returning from Cologne, Germany and less than a week after undergoing the XCell stem cell therapy procedure. I mention that because right now my overall physical condition is influenced by jet lag and travel stress. A week living in a hotel, eating different foods, walking much more than usual, airport delays, and dragging luggage and a fairly heavy carry-on would have worn me out on my best days. Now combine all of that with my current MSA condition and I’m not feeling particularly well at the moment. Ibuprofen is keeping the headache, stiff neck/shoulders, and back ache at bay. I’m still somewhat fatigued that’s evident in my balance and walking which is a bit worse than before. Today (Wednesday) is a little better than yesterday so I anticipate another week or more of “recovery” will be needed before I can judge if the therapy has had any immediate effect. I’m also prepared for the “long haul” of several months to learn if there’s been a positive difference. Right now, I plan to briefly describe my MSA condition on this blog every 2 weeks.

I can say without hesitation I have absolutely no regrets from undergoing the treatment at XCell. The staff and facility were exceptional. Cologne is a beautiful city with many attractions, super-friendly residents, and excellent restaurants. What I wrote in the introduction to this blog remains true today, “If I do nothing, the result will be nothing.”

Two other mentions: First, if anyone has specific questions about my XCell experience please contact me at the following e-mail address ssteidel@embarqmail.com and I’ll be happy to reply. And second, please allow me to wish Fran - my wife, executive assistant, travel coordinator, medical consultant, and chief caregiver, a very Happy Birthday today. There was no way I could have undertaken this procedure without her planning and constant support.

Post 09 - In Cologne

Day 8 (Monday) – Back on the Road (Sort Of) After a comfortable night at the Sheraton (breakfast buffet – and last night’s dinner were excellent) we dragged our bags back to the Delta counter and checked in. Our 9 hour flight to the States was scheduled to depart at 10:30am (arrive in Atlanta at 2:15pm with connecting flight to Florida scheduled for 4:15pm). Happily at 10:30 we were “wheels up” and on our way home. It looked like Murphy was done fooling with us. After a long, 3 movie flight we landed in Atlanta in what appeared to be a rainstorm. Apparently Murphy made the crossing faster than us and ordered up a serious storm with heavy rain, strong winds, and major flooding. As we headed down to the concourse for our flight to Florida, Murphy‘s storm caused the entire Atlanta airport – the busiest in the world - to cease operations. As the delay stretched out to over an hour, more and more flights were cancelled. We started to check out the most remote seating areas for what may become our overnight “lodging.” Among all the cancelled flights, our little Florida flight continued to show “Delay”- with a slated departure of 6:15pm. Could we be that fortunate amid a sea of misfortune? I have never been more relieved to see an entire flight crew appear at the gate and head down to the plane. Good to their word Delta had us in the bumpy air 7pm and in Fort Myers at about 9pm. Murphy even showed some pity on us by allowing our rain dampened luggage to arrive on the same flight. Finally, we walked in our front door, decompressed for about an hour and went to sleep (more accurately – went unconscious). All in all a very stressful two days – thank goodness for Ibuprofen Extra Strength).


Random Observation #4 - The German railway system is clean, convenient, and safe. Our ride to and from Dusseldorf was very smooth and scenic. It was especially safe on our trip back to the airport where we noticed a stepped up police presence. Apparently it was due to an increased threat from terrorists.


Day Seven (Sunday) – Murphy’s Law German Style I should have known things were proceeding too smoothly. I don’t know what they call it in Germany, but in the States it’s referred to simply as “Murphy’s Law” which basically means if anything can go wrong – it will go wrong (and usually at the worst possible time). Murphy’s Law struck us on Sunday. All started off well. We checked out of the Hotel Lindner at 4:15am and walked the few blocks to the Cologne railway station where we boarded the 5:51am train to the Dusseldorf airport stop. Everything still ok. We took the Sky Train to the main terminal and checked in at the Delta counter. Next we cleared security (interestingly, they don’t make you take your shoes off but force of habit made me remove them anyway) and passport control. Still no problem – in fact, we commented that in a little while (9:20 am) we’d be on the way home. I believe that’s the comment that must have awakened Mr. Murphy. While waiting at Gate 44 for the announcement to board I noticed activity that just didn’t seem normal. At 9am, Murphy struck. They announced there would be a delay while a slight mechanical problem was attended to. Then the captain took the mike and informed us the problem was electrical. He seemed optimistic about the delay being only a short one. That comment apparently only made Murphy madder. At 11am we all received 10 euro meal vouchers and instructed to not go too far away from the gate. Back at the gate around 2pm, Murphy finished us off. The announcement stated the flight was cancelled for mechanical reasons and we’d have to wait until the next morning for departure. We were given vouchers to the Airport Sheraton which included one night’s lodging, 60 euros toward dinner and other expenses, and a complimentary breakfast. If you must be stranded somewhere, there are worse places than the Sheraton (Murphy missed that one).


Random Observation #3 – An unexpected, sobering experience was our tour of the EL-DE Haus Museum on Saturday morning. The museum housed the Gestapo secret police during the WWII. The tour included the basement cells where political prisoners were housed, interrogated, tortured and, in some cases, murdered. The museum also candidly portrayed the rise and fall of National Socialism and the near total destruction of Cologne


Day Six (Saturday) – Venturing Out Today was sort of an experiment – walking a bit to test my balance and stamina. We started with a half-mile walk to a museum and about two hours viewing the exhibits. Afterward, a similar walk back toward the hotel and a stop for our last German meal and two final Kolsch beers. I’ll admit being a little tired when we reached the hotel. Over did it just a bit - but had to try.


Day Five (Friday) - Taking It Easy Even though I felt pretty well and wanted to go out for awhile, I obeyed the doctor's orders and spent most of the day relaxing in the hotel. Since the order didn't apply to Fran, she took a taxi to one of her "must see" attractions - the Chocolate Museum. She also walked around the Old Town district that abuts the Rhine. When she returned, I had to get outside - it was an absolutely beautiful day - so we walked to a nearby sidewalk restaurant for another hearty German meal and glass of Kolsch. We topped the day off with a cup of Starbucks and some people-watching near the Cathedral.
Physically, a day after the implantation, my only complaint is a stiff lower back. Don't know whether that's due mainly to the procedure or the firm hotel mattress. One other effect I've noticed is the decrease in urinary urgency/frequency - even after drinking plenty of water. It would be great if that continued.


Day Four (Thursday) – Stem Cell Implantation This is different. I’m lying in bed and dictating this message to Fran, my lovely executive assistant. The doctor was very insistent on my lying flat for the rest of the day to avoid a headache and other complications.
My stem cell implantation at the XCell Center took all of twenty minutes. I sat on one side of the exam table; the doctor sat behind me, pulled up my shirt, and had me lean forward on a pillow with my head down. After applying a local anesthesia, he started the lumbar puncture by inserting a needle into the spinal canal just above my waist and withdrew 3.5 ml of fluid. He replaced this fluid by injecting 3.5 ml of the prepared stem cells. Aside from the slight pinprick from the local I felt no pain or other sensation. I half expected to feel these little stem cell wonders rushing off to do their job. Maybe that will come later.
Today’s biggest concern involved the number of available stem cells. The average patient’s bone marrow sample produces approximately 2 million usable stem cells. Mine totaled just 700,000. While that total is admittedly low, the doctor noted that the “vitality” of my stem cells was 10% higher than normal, which should raise their overall effectiveness. He also added that they really don’t know what the optimal number is, so 700,000 may be more than enough.
Right now, eight hours after the procedure, I have some minor discomfort in my back from both Tuesday’s bone marrow extraction and today’s events. I will be very happy if it does not get any worse. That’s it for now; Fran refuses to work overtime. One last thing – We continue to meet interesting people on this journey. As we were preparing to leave the Center, a gentleman from Iowa was finishing up his second procedure at XCell for Parkinson’s. He was so pleased with the results of the first treatment last year that he decided to undergo a second round. It’s very heartening to hear these positive experiences. Good luck, Ted!


Random Observation #2 - Finding a cup of decaf coffee in Cologne is like trying to find snow in Florida. Every shop we stopped and asked in brought the same confused look. The local coffee is good and strong but not something I want to drink in the evening and then try to fall asleep.

Day Three (Wednesday) – Sightseeing Bus tour of Cologne and a little bit of walking around this beautiful city – didn’t want to wear myself out. Another hearty German meal and a glass of Kolsch.


Day Two (Tuesday) – 1st Visit to XCell Today can certainly be described as “interesting.” After a short taxi ride to the east side of the Rhine, Fran & I arrived at the XCell Center, which is on the second floor of the Eduardus Hospital complex. The Center is spotless and staffed by very professional and friendly personnel. After completing the usual registration paperwork, I had a few vials of blood drawn to compare with the report I sent from the States a few weeks ago – the one that drew the Clinic doctor’s hesitant comments. I wish I knew the results to see if all the red meat and iron supplements have made a difference.
Next came an informational session with Dr. Johns who will perform both stages of my treatment. He thoroughly described all aspects of the procedure and asked many pertinent questions. I was especially happy to hear his opinion that stem cell therapy appears more effective during the early stages of a disease like MSA rather than waiting until it has reached a more advanced level. I’m very pleased and confident with Dr. Johns as my treating physician.
After the conference it was time for Dr. Johns to perform the bone marrow withdrawal. With the exception of a slight pinch from the anesthetic needle, the procedure was painless. The withdrawal of 20 vials of marrow took about 15 minutes. These vials are now on their way to a lab in London for stem cell processing and return to XCell in time for Thursday’s implantation.
The entire process today took about two hours after which we treated ourselves to a typical German meal and my first Kolsch beer. After a day off tomorrow, it’s back to XCell on Thursday for the implantation. I’ll post another entry when that’s over. That’s one step down and one to go.

Random Observation #1 - The people of Cologne really are incredibly friendly and helpful. All you have to is stop on the sidewalk and open up a map and you’re immediately surrounded by a bunch of “Kolners” who want to help you find your way.

Day One (Sunday - Monday) - Travel to Cologne It’s about midnight Monday night here in Germany and I’m wide awake in our Cologne hotel room with a major case of jet lag. So instead of staring at the ceiling, I thought I’d take a few minutes to cover how the trip to the XCell Center has gone so far.
The travel on Delta was smooth, uneventful, and long – a total of about 10 hours in the air, with little sleep. Dusseldorf airport is relatively small and very manageable – we were through passport control very quickly. Clear signage (in German & English) led us to the Sky Train, which took us to the nearby railway station. I don’t know if Fran and I looked particularly needy or we landed in Germany on “Be Nice to Bewildered Americans Day” but we kept encountering locals who wanted to make sure we found our way. They helped us buy our train tickets (38 euros for 2 round trips), took us to the right track, and even gave us a hand with our luggage. When we got off at the Cologne station, one incredibly helpful lady insisted on walking us the few blocks to our hotel. Turns out her West Berlin parents were fed by the American airlift after the war.
After checking into the Hotel Lindner (a very nice place near to the town center) we crashed for a few hours, then took a short walk back (in the rain) to the railway station’s underground shopping area where we were forced to have some great pastries and much needed coffee. Brought two sandwiches back to the hotel for a light dinner, watched a little TV, and couldn’t keep our eyes open much past 7pm which for me turned out to be a long nap because here I am awake at midnight.
Seriously, I think one of the reasons people were so willing to help today was because the travel tired me more than expected and I was having a rough time walking and managing the luggage. Even though we only had one modest-sized suitcase each, I was finding walking progressively more difficult.
Well, tomorrow is bone marrow extraction day at XCell so I should try to get some sleep. I’ll pick up the blog when we get back to the hotel. Stay tuned.

Post #8 - At Last!

Finally – the date that seemed so far away is just about here. The suitcases are packed (had to dig out long sleeve shirts and regular trousers which don’t get much use here in SW Florida where the daily temp still reaches 90). The travel documents have been double checked and the flight and hotel reservations have been confirmed. Earlier this week we went to the local bank to pick up the Euros to pay the Clinic. My hand is still sore from signing my name so many times and filling in the name of the XCell Center on over 40 travelers cheques. On the date we purchased the cheques, one euro cost $1.46 USD.

We leave Fort Myers for Atlanta at about noon on Sunday. The flight to Germany leaves Atlanta at 4:25pm and arrives in Dusseldorf at 7:30am on Monday morning – 9 hours in the air! I’ll be wearing compression knee-high socks to help my blood pressure stay steady and plan to drink plenty of water along with walking around or at least standing up when possible. After a brief train ride we should arrive in Cologne no later than 10am. The Lindner Hotel, which is just a few blocks from the railway station, has graciously offered us an early check-in at no cost. After such a long and probably tiring trip, it’s a big relief to learn we can get into our room early.

The bone marrow extraction is scheduled for noon on Tuesday. If all goes well, we plan to do some sightseeing on Tuesday afternoon and all day Wednesday while XCell isolates the stem cells from the marrow. With all the red meat and iron-rich foods and supplements Fran has been feeding me over these past few weeks, I’m certain my stem cells are charged up and raring to go. It’s then back to XCell on Thursday at 11am for the stem cell implantation via lumbar puncture. After a day or so of rest in the hotel we hope to do some more sightseeing on Saturday before heading home on Sunday morning

As the trip to Cologne and XCell draws nearer, the apprehension grows as well. Is the outcome going to be worth the expense? What is the actual procedure and recovery going to be like? Are my expectations too high? How long do I wait for some sign of progress? For those of you who decide to undergo a stem cell implantation procedure in the future – either at XCell or some other clinic around the world - be prepared for an emotional roller coaster ride. I suppose it’s just human nature.

Finally, I’m taking a laptop along on the trip and hope to offer some random thoughts to those of you who have viewed this blog over 1200 times. Thanks again for all your support.

Post #7 - Some Thoughts from Fran

Hi, I’m Steve’s wife, Fran. I thought it was time to put my two-cents worth into this blog.

First let me say how proud I am of my husband for tackling his MSA head on. He has not wavered for one moment from the decision that he would give it his all. He has been so cooperative in doing what will be helpful.

You may have read that his red blood count is low so I have taken the challenge to raise those numbers by the time we get to the XCell Center in Germany.

Some things we have learned and are doing:
• There are two types of iron: the type that comes from animals and the other that comes from vegetables, fruits and beans. The interesting thing is that they should be eaten together to get the most iron absorption, for instance, chili with beans.
• There are supplements and there are supplements. Ferrous Sulfate is the most popular, least expensive but only about 35% gets absorbed. It can also cause constipation.
• In researching, I came across a product called Bifera Iron Supplement. We found it in Walgreens and Target. It is made from both types of iron; therefore more is absorbed and less side effects.
Let me say now that I do not endorse this product or suggest you take it or follow what we are doing without talking to your doctor.
• I printed out a list of iron rich foods and tacked it inside our kitchen cabinet.
• Some POOR sources of iron are dairy (milk and cheeses). They actually hinder the absorption of iron.
• We eat a healthy diet. Steve has yogurt and a banana every day for lunch. We rarely eat red meat. We eat the things that are heart healthy but now we find out not necessarily iron building. So therefore we (especially Steve) will be eating a little differently for the next few weeks.

Some of the foods I am making for him:
• Seafood especially shell fish
• Red meats, liver
• Eggs, especially yolks
• Nuts and beans
• Vegetables like spinach, broccoli, asparagus, and greens
• Fruits like grapes, raisins, prunes
• Breads, grains, and cereals that are fortified with iron
• An interesting fact, mentioned before, is that if you eat Vitamin C fruits and veggies with iron rich foods, more iron will be absorbed.
• Some Vitamin C foods are citrus fruits, tomatoes, raw cabbage, green peppers, cantaloupes and strawberries.

Well, I’m off to prepare lunch.

Thanks to all for your concern and prayers.
Fran

Steve’s note: Oh no, not another thick, juicy steak. Well, if I must. I just hope my newly supercharged red blood cells can make it through my clogged arteries!

Post #6 - There's Always Something

I didn’t think I’d be posting to this blog until just before leaving for Germany on September 13 but a problem needed to be dealt with.

Yesterday I received a phone call from my XCell Center contact who wanted to discuss the findings of my recent blood test. The blood test, conducted locally on August 10, was required by XCell as part of the preparations for my upcoming stem cell therapy. The test results were faxed to the clinic in Germany for review by a physician to determine if my blood was “healthy” enough to provide an adequate volume of stem cells. The physician’s evaluation was then sent back to my contact.

In the words of the reviewing physician, “In face of blood test values that are in the lower range of justifiable conditions, I am approving this patient now, but there is still some probability of lower crop of stem cells harvesting. This should be told to the patient.”

It seems my test values - especially the white and red cell counts – fall below the “reference (normal) range.” Apparently those low blood counts imply there is a “chance” not enough stem cells can be harvested for an adequate transplant. While he didn’t actually say so, I got the feeling I was being offered an opportunity to either postpone or cancel the treatment, or at the very least, was being prepared for less than superior results should the procedure take place as scheduled.

I immediately contacted my GP for his interpretation of the test results. He was kind enough to call a hematologist colleague who advised that while the cell count numbers were on the low side, my hemoglobin numbers were close to normal, which may help in the availability of sufficient stem cells. I was also told there is no quick way to increase blood counts. So – a decision had to be made: a)cancel, b)postpone, or c)proceed as planned.

After several hours of weighing the pros and cons of the situation – I have decided to go forward with the September procedure. In the meantime I will work with my GP to raise my values should the need arise for a subsequent procedure. I feel this decision is based on logic and common sense - not on emotion or exaggerated hopes. Nevertheless, it is still one made with no small degree of anxiety.

Added 8/24/09 Another reason to go forward with the procedure occurred to me after this message was originally posted on 8/21. The blood for my test was drawn on August 10 - minutes before I got my monthly B-12 injection. It stands to reason that my blood count probably went up into the "normal" range- but only after the blood was drawn for the test. If I had gotten the injection on August 9 - the test results would have undoubtly been higher. So - I plan to get my next B-12 shot a few days before heading off to Germany with the hope that my levels will climb into the acceptable range - thereby enhancing the outcome of the procedure.

Also added 8/24/09 To insure a good outcome, Fran has begun a one-woman crusade to boost my levels by preparing and serving me iron-rich foods. She started last night with a big helping of liver smothered with onions and bacon. I can feel my levels going up already!

More to come soon. Thanks for your continued support,

Steve S.
SW Florida

Post #5 – Applying for Treatment at XCell – And Other Details

Once the decision was made to pursue stem cell therapy at the XCell Center in Cologne, Germany, I followed the application process outlined on the XCell website www.xcell-center.com
1. In early April of 2009 I submitted XCell’s online Inquiry Form to determine if my condition is one the diseases the clinic treats. MSA is not specifically listed as an included disease on their web site but does receive clinic recognition.
2. After receiving preliminary approval, I completed a more detailed online Medical Information Form
3. In mid-April I received a phone call from XCell’s North American representative requesting faxed copies of medical reports and MRI summaries for review by XCell’s medical panel. The representative was very helpful and able to answer all my questions. He has continued to be my principal contact at XCell.
4. A week later I received an e-mail from XCell informing I had been approved for stem cell treatment
5. I sent an e-mail confirming my intention to undergo the procedure
6. Finally, I received a September appointment for bone marrow extraction and lumbar puncture implantation. I chose September for my convenience; I’m sure I could have scheduled an earlier date.
Note: Steps 1-6 were completed in less than 30 days

Projected Expenses:•
$10,500 (7545 Euros) for XCell Center treatment costs. Exact dollar amount will fluctuate slightly based on the daily exchange rate. No money was requested upfront – payment in full (in Euros) is expected on first treatment day.
• Fran & I are using the last of my Delta frequent flier miles accumulated during several years of business travel. The average roundtrip airfare per person between the US and Germany from most East Coast cities is approximately $800. There are less expensive flights available but they seem to involve more stopovers. Flight time from Atlanta to Germany is about 9 hours. We found flying into Dusseldorf (30 minutes to Cologne by train) rather than directly into Cologne offered more convenient flights with fewer stopovers. Flying into Frankfurt and taking a high-speed train to Cologne is another, lower cost alternative. I certainly recommend “shopping around” for the best travel plans.
• $1300 - Cologne hotel accommodations (6 nights – double occupancy). We chose the Hotel Lindner, a modest-cost hotel within walking distance of Cologne’s railway station and tourist district. We also chose to stay six nights rather than five – the minimum suggested by XCell - just to be on the safe side should there be any medical complications.
• $100 - daily per person for meals. We understand meal costs are high in Cologne
• $60 – two roundtrip train fares between Dusseldorf and Cologne
• $50 – two roundtrip taxi fares between hotel and clinic
• $50 – daily per person sightseeing costs
• $50 – daily per person miscellaneous expenses
• $125 – per person Passport w/ photo fee

Total Related Expense
$13,200 Estimated for Steve
$ 1,355 Estimated for Fran
$14,555 Estimated Total
(Remember – this total does not include airfare)

A Few Other Random Observations

• If you intend to use your cell phone in Germany, be sure it has the technology to make and receive calls to/from Europe. Also, rather than paying a hefty per-call charge, check if your carrier offers a special international calling feature which makes each call much more economical. These plans can often be activated for short terms, such as monthly.

• The XCell Center accepts three forms of payment: cash (in Euros), travelers checks (in Euros), and major credit cards. After discovering XCell placed a 196 Euro surcharge on credit card use, I chose the travelers check option. My local bank needs just a day or two to amass the amount of checks I need. The largest travelers check available in Euros is 200 – which means I’ll have to prepare over 50 individual checks

• And finally, remember Germany operates on a different power system requiring converters and adapters if you bring along any electronics – like computers or cell phone chargers

This will probably be my last formal entry until just before the trip to Germany commences on September 13th I’ve tried to discuss everything involved in the decision process of seeking stem cell therapy to combat MSA. If there is anything you would like to add to this discussion or questions you’d like to ask – please don’t hesitate. Thanks again for all your support and hopefully I’ll soon be able to report substantial progress in MY MSA JOURNEY.

Post #4 - Why the XCell Center?

Like many other Multiple System Atrophy (MSA) sufferers, the prognosis of no treatment or cure for MSA was difficult for me to accept. How was it possible for the advanced medical system in this country to have so few answers for this terrible disease? The assurance from my doctors that they will actively treat my symptoms yet-to-come was not very reassuring. Surely something is available to combat the steady progression of MSA to its predicted conclusion.

With that objective in mind, my attention was drawn to a recent entry on the Yahoo MSA Support Group site shydrager@yahoogroups.com . The entry was posted by group member Sheila who took her 67-year-old mother to Germany for stem cell treatment and felt the procedure offered positive results (Sheila’s original entry and subsequent follow-ups can be viewed in the archives of the MSA Support Group). Sheila deserves many thanks for sharing her and her mom’s XCell experience with other group members.

While I was aware of the general concept of stem cell therapy, this was the first time I learned clinics existed which offered treatment specifically for MSA patients. As a skeptical former police officer, I wondered if these clinics were run by medical scam artists preying on vulnerable people desperate for a meaningful treatment.

I carefully scrutinized every page of XCell’s website www.xcellcenter.com and was impressed with the straight-forward nature of its content. Unlike a few other stem cell clinic sites, there were no claims that “miracle” cures were practically guaranteed. In fact, XCell made it clear that while hopeful of a positive outcome, due to the complex nature of stem cell therapy, “there is no guarantee for success.” The only thing the website’s many informative pages didn’t mention was specific treatment for MSA. Subsequently I learned that relatively few MSA patients have undergone the procedure at XCell– so a meaningful number of case histories (and the results) have not been compiled. Their experience with Parkinson patients is much greater, with two-thirds showing either “some” or “significant” improvement.

Before deciding which, if any, facility I would select, I investigated other clinics in China, Mexico, Panama, Ukraine, and the Dominican Republic. For those of you who are wondering why there are no clinics listed from the United States – the FDA considers these type of procedures (even using your own stem cells) to be a process requiring their study and approval – an approval apparently still years away.

After weighing all the different stem cell implantation procedures, techniques, clinic locations, costs etc., I decided on the XCell Center for four primary reasons: the German reputation for quality and precision, the ease of travel to Europe, the relatively manageable cost of the procedure, and perhaps most importantly, the use of my own stem cells rather than neural, umbilical or other sources not my own.

Finally, if I had this decision process to do over again, I’d seek the input of my GP first rather than last. In fact we didn’t discuss it until I needed him to write an order for preliminary XCell blood work. I trust him completely with Fran and my health care – why hesitate to ask him about stem cell therapy? Looking back, I think subconsciously I didn’t want to hear him say the treatment was worthless and to save my money (and dampen my hopes). As it turns out he’s fully supportive, medically curious, and optimistically awaiting the results.

So – it’s off to Cologne, Germany on September 13th with high hopes and anticipation. I’m also looking forward to trying Sheila’s secret weapon – the local Kolsch beer. Reputedly it has healing powers.

In a few days my next entry (#5) will be a “nuts and bolts” description of the XCell application and registration process, procedure costs, travel plans, and all the many details involved in an endeavor like this.

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.

Post #2 - Getting the News

What eventually was diagnosed as Multiple System Atrophy (MSA) first became noticeable as an impaired gait in mid 2005, when I was age 61. At that time I was traveling frequently, making daylong presentations involving much standing. After flying home to SW Florida – often late at night – I began experiencing an unusual “weaving” gait when walking up the gangway and into the terminal. Initially, I wrote off the experience to travel/work fatigue, especially since the condition subsided after a day or two.

Throughout the remainder of 2005 and into 2006, the condition occurred more frequently, taking place at home as well as on the road. I found myself occasionally bumping into objects as well as people. I also experienced a balance-related fall from a pier into the water that dislocated my collarbone and injured some shoulder nerves and muscles.

In April of 2006, I retired completely. The condition, however, did not abate but instead has continued to progress to the current level, which will be detailed in my next post.

In mid-2006, it was determined my B-12 level was low and I began monthly vitamin injections. There was an opinion that this deficiency might be causing the erratic gait. By late 2007 when the condition continued to worsen, and other symptoms arose, I sought the opinion of a neurologist who ordered several MRIs. When the MRIs proved negative, he added high strength folic acid in an effort to improve the B-12 absorption. About 6 months later when the condition and associated effects worsened, I returned to the neurologist who suggested a second opinion from a facility such as the Mayo Clinic or Johns Hopkins Medical Center.

I selected Johns Hopkins in Baltimore, Maryland – for no reason other than my daughter lives nearby - and traveled there in November of 2008 where I was examined by Dr. Paul Dash, then Director of Hopkins’ Ataxia Clinic. After a thorough neurological examination and a review of my MRIs, his diagnosis was pretty definite: Multiple System Atrophy-C (the C indicates “cerebellar dysfunction” meaning the autonomic nervous system is affected whereas MSA-P involves predominantly “Parkinsonism-like” symptoms such as tremor and rigidity).

The diagnosis was sent to my GP and neurologist here in SW Florida. Both admitted they had little, if any, experience with MSA. They were very sympathetic and medically curious but admitted there wasn’t much they could offer except to treat the various symptoms as they arose. It was decided I’d schedule regular visits with my GP who would involve other specialists as needed. I currently see my GP every 3 months and have no appointments scheduled with the neurologist. I have also been seen by a urologist who has treated my urgency/frequency issues with partial success.

Since my doctors couldn’t offer much insight into MSA, I did like most people and sought information online. Needless to say, the findings were pretty shocking. Learning that there is no cure and a limited lifespan can really ruin your day.

It was at this point I found the Multiple System Atrophy Support Group shy-drager@yahoogroups.com which provides a forum for MSA patients and caregivers. This support group’s postings, while admittedly depressing to read at times, offer invaluable information and advice from people who have significant experience with this insidious disease. It was through this exchange of information I learned of stem cell therapy and eventually chose the XCell Center in Germany.

My next post in a few days will detail my current medical condition which I hope the procedure at XCell in September will halt or better yet reverse.

Post #1 - Introduction

Hello - My name is Steve S. and I am one of an estimated 75,000 Americans who have Multiple System Atrophy (MSA). Briefly, MSA is a neurological disease resulting from degeneration of certain nerve cells in the brain and spinal cord. Body functions controlled by these areas behave abnormally in people with the disease. These include the autonomic (involuntary) nervous system (which controls blood pressure, heart rate, and bladder function) and the motor system (control of balance and muscle movement). The cause of MSA is not known and, as of now, there is no cure and no significant treatment.

I don’t believe that last sentence is necessarily correct. There may be no significant treatment here in the United States but innovative medical efforts are underway elsewhere in the world that have shown promising results. In particular, I’m referring to the process where the patient’s own stem cells are extracted from his or her bone marrow, treated, and introduced into the spinal column with the intent to have them replace the defective MSA cells.

The purpose of this blog is to chronicle, step by step, my journey to undergo this innovative procedure at one of these stem cell treatment facilities - the XCell Center in Germany – and to report if it's successful in halting, or better yet, reversing this devastating condition. I hope my experience will be helpful to other MSA patients who are considering undergoing the XCell Center stem cell procedure.

In addition to my experiences with this treatment and its aftermath, I also intend to describe its effect on Fran, my wife of 44 years and my wonderful caregiver. We are taking this journey together.

In this blog I plan to include:

Information about me and the development and current status of my MSA condition

• My experience to date with the XCell Center (contact, procedure, costs, travel, etc.)
• General information about MSA - including a glossary of terms
• Websites covering support groups, medical facilities knowledgeable in MSA issues, additional stem cell clinics, and other information of specific interest

There is another feature of this blog I hope will be successful, namely, an opportunity for the reader to contribute with either questions or comments. Yes, this is my blog but in reality it’s intended as a place for the exchange of MSA-related conversation. In particular, I’d like to hear from other MSA patients who have considered or actually undergone stem cell therapy either at XCell or another clinic.

To leave a remark or to view what others have said, simply click on the word “comment” at the end of each post.

One last comment: I have no financial or other interest in the XCell Center and plan to be objective and frank about my experience with them. If I’m unhappy or concerned about any aspect of my treatment – it will appear on this blog

Please include http://msajourney.blogspot.com/ in your Favorites and check back often for updates.

My next post, in a few days, will be a brief description of my MSA history.