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.