Non-Linear Thinking

What gets on my nerves...

2009-12-11T09:54:00.000-08:00

I haven't posted in awhile, just been busy and also not sure which of several topics to talk about. Anyway I decided I was going to update my status first.

At this point I have not seen any dramatic results. Under the more optimistic scenarios I would have seen something like that by now. Realistically, given the length of time my disease has been around, repair is going to be very complicated.

If you look at any detailed descriptions of the Central Nervous System (CNS) which includes the spinal cord and brain, its an incredibly complex system. As I have stated, my left leg function is the most significantly impacted by the damage MS has caused. There is no one nerve, bundle of nerves or place along my spinal cord where one act of repair will "fix" the problem. Its also probable that some tissue is just degenerated entirely which is an altogether more difficult problem. Because signals can be rerouted or there are multiple pathways serving a particular functional area (e.g. calf), some repair does not mean complete repair in the same way that function is not necessarily lost in any one event at any one time.

Even when nerve conduction is restored the muscular strength also has to be recovered. I have experienced some sensations, especially in my left arm which is also affected, that are new and lead me to believe something is going on. The ability of any MS treatment to improve function is very hard to measure. There are no real good quantitative tests, it generally falls to indirect things like walking speed, which combines the aggregate function of many nerves and many muscles.

So in summary:
1. More repair is possible
2. I believe some repair has happened
3. I am definitely not worse than before so am hopeful the rate of progression down has been slowed or stopped.

Three Months...

2009-10-30T13:43:00.000-07:00

Ok, I’ve not been writing much lately. I’ve been real busy at work and at home while battling a couple minor but involved medical issues best summarized as similar to a cold but not at the level of the full out flu. In other words, I’ve been down a lot more than I’d like. For example, a little fever will aggravate my symptoms dramatically. Not a good thing. As you may have read here, when I was in Costa Rica, one of my IVs was administered too quickly and the resultant fever it caused and the impact it had on me, was a little scary.

I can’t report any significant changes. The information I have gathered puts the window at 3-6 months (I am at three now) and the migration of noticeable impacts from the trunk outward with time. Otherwise the ability of the process to repair my nervous system remains unknown at this point. As I have said all along, this was always something with uncertain results. And I can be confident that whenever there is any Stem Cell Therapy available for MS in this country, it will be like every MS treatment currently used, “try it and see if it works”.

But I am going to be closing out this chapter of my life soon. This opportunity not only presented me a chance for better functionality, but the time and place to start a new life. Having lived in anticipation and uncertainty for such a long time, I want to focus on what I have in front of me and what I can do now. Maybe I should have already been doing that, to a greater degree than I will, but I’m stubborn and dealing with MS means you have to be in denial sometimes, lest you give up too easily. It can also make you self centered and not much fun. To be perfectly honest, that part of the disease sucks worse than the physical part.

I’ve never been the type to pray for some divine answer to a question. God says, “I’ve given you a brain, work it out”. I’ve got some definite ideas and lots of possibilities. I’ve also got an enormous number of terrific friends and a great family (close and extended), whose love and support will be my motivation.

October

2009-10-02T13:15:00.000-07:00

I've been busy at work and busy at home. I have to be sure to keep focused on the positive things that have nothing to do with MS. My wonderful wife, my amazing kids and their rich lives.

Laura works hard to be a great mom and to be a great realtor, both full time jobs and does more than her fair share around the house.

Alyssa is doing the college scene and I enjoy seeing that spark of the transition from youth to adulthood.

Julianne is playing super volleyball and having a leading role in Les Miserables which will be performed in November. And taking classes like Chemistry.

Michelle is doing horseback riding with the wonderful Sarah twice a week and taking care of the cats. I might add, her backpack for school (they don't have lockers anymore) weighs as much as I used to take into the mountains for a four day hike.

I have a full and joyful life. I think my stem cells have been doing some work, they are small, but there are a lot of them.

The 900 Pound Gorilla

2009-09-08T09:43:00.000-07:00

In my day to day MS life, my left leg is the 900 pound gorilla. There’s hardly anything I do that it does not impact. I can get by with a weakened left arm because I can just use my right. Walking is obviously made difficult, and that affects endurance. Getting up from a chair or the bed, or even rolling over in bed requires more effort. The impacts are numerous and very obvious. I could hide my MS from you if I didn’t have to walk.

So as I get close to the period where I hope to see improvements resulting from my stem cell therapy, it will be hard to not focus on what’s happening with my leg. There is no doubt it would be nice to see some positive results there. But it’s not the only place I could use some changes and its also true that improved nerve function needs to be accompanied by restored muscular condition, thus the need to work the muscles.

So no matter what happens, I’ll be limping for awhile, I just want the task to be easier. But I’ll be looking elsewhere also. And I’ll be glad for the decline to slow or stop.

The "Stemmies"

2009-08-24T09:19:00.000-07:00

I think a lot about the friends we made in Costa Rica. Although I think a lot about those in my situation where improvement was not going to be (and was not) quick, but also about those patients with other conditions besides MS as well as the friends and family with them.

Through our frequent shared rides back and forth to the hospital, time spent waiting for and going through PT or injections, dining together or sitting around in the evening sharing coffee and stories, these are people I am forever connected to.

The polite thing to say is that no matter what happens, getting to know these people was at least a great secondary benefit of our trip. So I will say that. But having looked in the eyes of someone, like myself, challenged by small steps, or a family member with a look of concern I can instantly recognize, I'm really not interested in consolation prizes. I tend to think no one else is much interested in that either. We went there to get better, as individuals and as families.

The Enemy Within

2009-08-12T09:27:00.000-07:00

No I'm not talking about some political conspiracy. As a science oriented person, I've never personified MS, I understand stuff happens and whether we understand why or not, doesn't mean someone's picking on us. In all the time up until recently that I've had MS, there was very little I could do to make things better. But if you've been reading along you know I've embarked on this stem cell journey, with lots of help, because I can do something. Not just cope, not just slow it down or hide the effects with some drug, but repair damage.

As we began this effort many obstacles were presented and were overcome but now that I've gone and come back, the process has changed. The stem cells will have about six months to do whatever it is they are going to do and I will have to do the hard work I talked about in my last post. MS is getting personal, it wants me to give up, be tired, have a bad attitude, and accept it. There is no glimmer of improvement starting out to motivate me, it takes time, time in the dark looking for the light. Yeah I know the deal but you don't make a decision to quit, you just give up little by little. Discipline is the only weapon I have.

One of my stem cell buddies from Costa Rica, Mark, wrote on his web site:

Today, I feel worse than I did before I began this odyssey a month ago. Don’t Panic! Those of you with MS know that anytime you make a change to the regimen of your treatment, whether it be a drug you are taking, your diet, or what time of day you take your nap, it always makes you feel worse than if you had just done nothing. That is one of the secret weapons of MS. It wants you to keep doing nothing, stop trying new things to beat it. You cannot succumb to the temptation to rest, no matter how tired you are.

The Near Term

2009-08-01T21:01:00.000-07:00

In the time between now and the middle of October, there will be nothing I can expect to happen. I will be doing some physical therapy exercises and taking what should be a good nutrition cocktail; Omega 3, Vitamin D3 and B Complex. I am feeling well and enjoying sleeping. Laura said one night that I felt hot and that it was the stem cells working while I slept. A good reason to roll over instead of rolling out.

I've obviously gone over every possibility for how this will work out and at this point, having been poked and incised with lots of things taken out of me and lots of things put in, I'm just going to focus on what I can do. There were times in the last 15 years I never thought I'd be in position to get better, and plenty of times when I knew I was getting worse. I'm going to enjoy the upside possibilities for awhile.

"in sickness and in health"

2009-07-27T13:29:00.000-07:00

If you've been married, you've probably said that. One thing I can tell you from what I saw among the "stemmies" we became acquaited with in Costa Rica, its that for everyone in my position, the importance of a spouse, friend, parent or child in the lives of people affected is without measure. Its a tough job, often thankless, as full of uncertainty and despair as any thing you can do, any life you can lead.

I have told you before but I will say it again, Laura has been a champion, not only for me but more importantly for her children. I have been blessed and am thankful to have her fighting the fight with me.

Day 12

2009-07-24T19:57:00.000-07:00

Finished off with my last intrathecal injection and stem cell IV. The side effects of the IV were much less severe this time, Dr. Lara went very slow with the injection. We leave the hotel around noon and will get home probably 12 hours later. I'll post more about the experience and the future coming up.

Thanks for all the prayers and well wishes. We felt them.

Day 10 and 11

2009-07-23T09:52:00.000-07:00

Wednesday was my fourth intrathecal injection and the first of two IVs. One of the side effects of the IV is that it can cause a mild fever, which it did to me. As badly as I get around, fever makes things considerably worse. So the rest of yesterday going into this morning was rough but Laura helped me get going this morning and I went to PT which, along with Ibuprofen, got me back in working order.

If all my nerves were repaired tomorrow, I'd still struggle with muscles that have been wasting away. So I will need to work to make any repair count.

Day Nine

2009-07-21T22:37:00.000-07:00

Laura did some shopping and we spent a couple hours talking with Mark and Celeste, a terrific young couple here for treatment for Mark's spinal cord injury.

My PT was tough, as usual.

Tomorrow will be busy, but won't start until 10:00 am, so I can sleep late. :)

Day Eight

2009-07-20T21:09:00.001-07:00

This was a PT day with intrathecal injection #3, That ends up taking about 8-9 hours when you add in travel, waiting and recline time, the injection itself takes about five minutes. Feeling good. We had Burger King for dinner.

Drivers in Costa Rica are agressively defensive, its probably like what I've heard about Italy.

Day Seven

2009-07-19T21:07:00.000-07:00

Mark is here for treatment with his parents, Bill and Mary. Laura and I have become good friends with them in the week we have been here, and today the five of us went out of town to the west coast of Costa Rica and we were guided by Rudolfo and his niece, Andrea, both of whom are very nice with great senses of humor. This is a normal experience with Costa Ricans.

We drove through some lush beautiful mountianous areas, stopping to take a gondola/tram through and over what was described as a transitional rain forest. It was a very unique experience. We had lunch at the touristy town of Jaco on the coast before coming back to San Jose. I am feeling good today.

Tomorrow is PT and intrathecal injection #3. People want to know if I'm feeling anything happening and the answer is not yet. It will be 8-12 weeks before repair due to stem cells starts showing up, I have to tell myself that. We are a drug culture, take a pill and feel something quickly. This is a natural process.

Day Six

2009-07-18T19:57:00.000-07:00

Nice restful day. We had some good meals at a really nice Italian restaurant in the hotel. Tomorrow we go to the west coast of Costa Rica for a rain forest tramway tour.

I am doing much better now a day further away from the liposuction.

Day Five

2009-07-17T21:08:00.000-07:00

Recovery from the liposuction was the main thing. No real pain but soreness, enough so to knock my mobility down a notch. This afternoon back to the hospital for my second intrathecal injection. Then the evening on my back. Getting a bit tired of being poked but a small price to pay really. No one has been bad at it, which helps a lot.

Tomorrow will be laid back and we hope to do somw sightseeing on Sunday.

Day Four

2009-07-16T17:44:00.001-07:00

OK this was the liposuction day where they remove adipose fatty tissue from which they will get stem cells for two IV infusions next Thursday and Friday. Took about five hours from going into pre-op until leaving, a good hour and a half being out in la la land. The rest of the day has been recovering in semi la la land.

Tomorrow will be stem cell injection #2.

Day Three

2009-07-15T17:03:00.000-07:00

Started off with PT which has produced some good techniques to use going forward.

Later went to another part of the hospital for my first intrathecal stem cell injection (9 million Mesenchymal and CD 34+). Basically this was uneventful. The doctor who did the procedure was flawless, Dr. Lara from the clinic brought my stem cells in a cooler and Laura watched them being injected. After a half hour laying down we were taken back to the hotel where I spent all afternoon laying flat. No pillow! Listened to the Ipod (including Beatles 65).

Patience. This isn't a drug, its a natural process and takes time.

Tomorrow is the mini-liposuction which will be my roughest day.

Day Three Pre

2009-07-14T18:30:00.000-07:00

I will get my first intrathecal injection of stem cells tomorrow. Dreams do come true!

Day Two

2009-07-14T15:02:00.000-07:00

PT this morning, mainly focused on ways to improve walking and balance. Otherwise pretty laid back. Tomorrow will be my first intrathecal injection with 8-9 million stem cellls. The advantage of umbillical cord stem cells is that they are adult stem cells thus more differentiated than embryonic, yet are more robust than stem cells from an "older" adult.

The doctor told me yesterday that improvements based on repair begin showing up in 8-12 weeks.

Day One

2009-07-13T16:02:00.000-07:00

Mostly orientation and blood draws to use later when injecting stem cells. Also went to the hospital for consultation with anestheseologist prior to miniliposuction and baseline PT session. A couple notes:

1. Facilities are impressive, the hospital is new and clean and state of the art. Everyone is nice and very professional. Its hard to adequately describe it but nothing like you would typically associate with medical care in Latin America. A very confidence building experience.

2. The Physical Therapist was very sure to tell me I had a lot of work ahead to correct some bad habits in my walking style. After 15 years I have gradually deformed my spinal column and posture. She's going to start me over and it will be essential to getting the benefit of the treatment. She doesn't like the word "can't".

Made It

2009-07-11T17:33:00.000-07:00

We arrived in CR and are catching up on sleep. Its a beautiful place and the people are very friendly. The Clinic does a great job getting you through the airport and to the hotel. We've already met three couples here for treatment.

My schedule starts on Monday with bloodwork and an initial physical therapy session to see where I am.

The intrathecal stem cell injections will be Wed, Fri and M-W-F next week. My mini-liposuction will be Thurs and I'll get the stem cells IVs, next Thurs and Friday.

Six more PT sessions along the way, we've been told they are "rigorous but excellent."

A Better Explanation

2009-07-09T19:01:00.001-07:00

This afternoon, less than two days from our trip to Costa Rica, my wife was driving with her assistant and while waiting at a stop sign she witnessed a horrible accident. An elderly couple driving an SUV made a left turn to enter the street Laura was on, and was hit broadside by a truck traveling at a high rate of speed.

The collision launched the SUV over Laura's car and it landed in a ditch. The couple inside died instantly.

Laura was shaken but unhurt. I am a scientist and I struggle to understand how that could happen. Her car was covered with broken glass, but untouched.

A coworker said, "God wants you and Steve on that plane."

What's Going to Happen

2009-06-30T10:01:00.000-07:00

1. The treatment: We'll get there on Saturday afternoon (July 11) and starting probably on Monday morning three basic things will happen. First I'll get a mini liposuction to remove some fatty tissue and stem cells will be extracted from that, expanded and reinjected intraveneously near the end of my visit. Second I will recieve five intrathecal injections of stem cells (about ten million each time) derived from umbillical cord blood. Every other day and each followed by 6 hours on my back. Thirdly will be physical therapy, where I will begin to use techniques to enhance the effectiveness of the repair process.

2. What happens when I get back. Lot's of physical therapy and a diet designed to maximize the environment for the stem cells to work in. This would be good advice for anyone in any situation, but this is vital during the period after the treatment to maximize the effect.

3. How long will it take to see results and/or know its working. For me, results will likely not be rapid or rapidly dramatic. My damage will take the growth of new myelin (takes three weeks to several months) and the growth/repair of nerve axons (up to six months and possibly longer). But I will know soon enough, slight improvements to a situation that's been long term and constant will be as noticeable as that period 15 years ago when those slight changes clued me in to the return of MS.

On to Costa Rica

2009-06-11T12:44:00.001-07:00

As of today (June 11) we have enough money to pay for the treatment and we are planning to take care of travel expenses ourselves.

There are no words to express my gratitude.

We will leave early on July 11th from El Paso, switch planes in Houston and direct from there into San Jose by mid-afternoon.

I expect the process will start on Monday. My Ipod will be loaded with music, books and a few movies, for those long stretches on my back. We will try to post regular updates at this address.

We return on July 25th.

Still holding your breath?

2009-06-06T20:23:00.000-07:00

Some recent headlines on the stem cell front, not MS related but these fit into a familar theme: What do all these have in common?

1. "Heart Derived Stem Cells Develop Into Heart Muscle"
2. "Protein Stimulates Stem Cells To Repair Muscles"
3. "Stem-Cell-Coated Contact Lenses Are Curing the Blind"

If you said its not being done in the U.S. (1. is The Netherlands, 2. is Canada and 3. is Australia) you win an FDA approved big sucker (costs a lot and takes forever to finish). By the way these are adult stem cells from the patient's own body.

Try..Wait..Try...Wait...

2009-05-05T13:22:00.000-07:00

One thing that becomes very clear when you look at Multiple Sclerosis, and how it affects individuals differently and how different treatments, medications and therapies work (or don’t work) and the side effects that can vary, it’s that there is nothing close to certainty. What has been the best help for some has caused others to have severe negative reactions. In some ways the scatter can be both intimidating and depressing.

I have Secondary Progressive MS (SPMS), while most people (80%+) with MS have Relapsing Remitting MS (RRMS). The details are different, what causes problems with RRMS (attacks on the myelin, characterized by inflammation and nerve malfunction, attacks which go away with the affected area often healing completely or partially) is not the same as for SPMS (nerve degeneration of unhealed areas previously attacked, leading to continued symptoms which worsen).

Many people with SPMS, myself included, have used or been given the chance to use, treatments specifically developed for and/or approved for RRMS. In order to get the insurance companies to pay, the doctor will say you are RRMS, which is a technicality anyway. But why did I get 23 intravenous injections of a steroid, Solumedrol, over a nine month period? It’s a powerful anti-inflammatory which can help reduce the effect of an acute attack. I’m not getting acute attacks. The answer in these cases is, that in spite of conventional medical wisdom, and what the FDA approves, that the disease is not a sure thing and sometimes these options work. The odds may be long but you don’t know unless you try them. Trying something that may work or that has a slim chance of working happens all the time with MS. By the way the steroids didn't help. But the doctors, nurses, insurance company and the FDA were ok with it.

Besides trying, waiting is an option. Put aside any concern about the political and moral issues involved with embryonic stem cell research. Stem Cell research and treatments involving Adult Stem Cells (such as that used in Costa Rica) is widespread but if you read this, you’ll see that nothing that’s going to help people like me (along with people with a wide variety of medical issues) get treatment in the U.S. is likely to happen anytime soon. To characterize this as simply a matter of money and control is probably unfair but damned if I can come up with a better explanation.

I’d love to get a treatment here that my insurance company will pay for and I’d be willing to wait if something was anywhere close to happening. Its not.

July 12-24, 2009

Faith

2009-03-19T17:35:00.000-07:00

This was not something I learned about at an early age or learned easily. When you think you are in control, you don’t think you need to rely on faith, especially when you don’t want to involve other people in your life. Another thing I learned was, faith that was nothing more than waiting for the right people to do the right thing while you sit back and wait, isn’t really faith.

There’s a religious element to faith and for many it’s the biggest factor in how they view faith. But there’s a saying that not even God can steer a parked car. My experience has been that having faith that God will take care of things means I’ve had to do what things, I can do, and seek and ask for the help of others. That last part is where I’ve struggled. Sometimes having faith means getting worry out of the way so you can focus on the tasks you need to do but sometimes it means opening yourself up to the small help of many people.

The treatment for which I will be going to Costa Rica will cost $20,000 plus travel and living expenses which will be another 3-4 thousand dollars. Because this procedure is taking place outside the United States and does not involve practices approved under typical protocols, it is not covered by insurance. If I could write a check, I’d have already gone. If I lived on my own, I’d go the “unemployment/college” route which means live a barren life until I saved the money up. But I have a family and obligations associated with being a husband and father; I am not able to live in a ramshackle house for $65 an month, where we turned the heat off at night (that was college, circa 1977). But more importantly is that I know that my family wants this for me enough to support me in any way they can and waiting for all the different elements to fall into place without asking for help is too big a risk to take.

So we are asking for help, in whatever form you can give. My kids have set up a way to help and I hope you will check it out. I also encourage you to visit the web site of Holly who went for treatment last year. Not only does she detail her own experience in Costa Rica, but she also has lots of good information about the medical issues involved.

Thanks,

Steve

Motivation

2009-02-28T14:00:00.000-08:00

So why do I want to do this? To be honest, I'm the kind of person who can easily settle for life as its handed out. Somehow, in God's grace, He led me to a place where for what could have been considered all the wrong reasons, I met Laura and over five years dated, fell in love and finally decided (at more or less the same time) to get married.

It was only about six months after we got married in the beautiful Rose Garden at the Fort Worth Botanical Gardens that MS made its first definite appearance in my life and Laura's. Over the time since then, which I've written about below, we had three children, Alyssa (1990), Julianne (1993) and Michelle (1996).

For most of the 90's, MS did not have too big of an effect on my dad life, although it surely did have some. But it was hard on Laura's and my relationship. Its not always clear what's happening due to the disease in a primary sense or what's happening due to the impact the disease has on your body (a secondary effect like fatigue) or what happens due the way you are dealing with it (a tertiary effect like depression or frustration). Laura, like every significant other in this situation, was left to deal with me and all my "effects' while being a parent. In many ways I was harder to cope with than the girls (probably in every way).

My only redeeming quality throughout most of this period has been my commitment to the marriage, however badly I might have done at trying to convert that commitment into action.

Laura's greatest attribute during all this, and she has many, is, in contrast to me, she is not content to settle for what life hands out. So she has been with me the whole way in my search for a better life and this treatment, to whatever extent it helps me, will be a reward to her faith and love for me and her children. I am a careful person and I'm not desperate but I am compelled by my love and appreciation for her, and my desire to be a better father and some day a grandfather to do this thing.

MS and Me (The later years)

2009-02-13T10:27:00.001-08:00

I could have made this a long and detailed post but in reality its simple. Around 1994 after seven years with no signs that MS was going to be a part of my life I began to detect a few very minor changes that were very consistent. This included a stiffness in my left knee, especially when I'd first stand up and walk and I was having to get up in the night to go to the bathroom. After several months like this, I was thinking that the bathroom thing could be something to do with my prostate and scheduled an appointment with a urologist, In the meantime I happened to go to a bookstore and browsing around, went by the medical section and was looking at books in the "P" area for prostate. It was not a big store so just a few books down was a book about MS, I pulled it out and began reading around and sure enough my symptoms, in combination, were associated with MS caused damaged in the lower spinal cord. When I ended up in the office of one of the most prominent MS specialist neurologists in Dallas several months later and with another inconclusive MRI, he said what was to be my reality, "it may not be MS , but more importantly, there's really nothing else it could be".

So what happened next and has continued up to today is a slow continuous "progression" of my disease. No new primary symptoms, no attacks, no bad days, no good days. Day to day there's been no detectable difference and nothing I noticed over the course of months. But year to year, things have gotten noticeably worse, Taking five year chunks, its very significant. Just in terms of my left leg, I have come to the point where I haven't been able to run in years, I can't walk very far and have difficulty just getting around the house. Stairs require using a rail. Each step takes focus or tripping will result. I can't walk and chew gun at the same time.
One of the most common secondary symptoms of MS is fatigue. Not fatigue of a life well lived or not getting enough sleep, but lassitude (look it up, I had too). I'm not going to list everything I deal with but medications to cope with symptoms have generally been ineffective and only make me more tired. Here's the bottom line, MS is a neurological problem, most medications used to treat MS symptoms are either designed to deal with a muscular problem (for example) and "may" help compensate for a neurological deficit or are medicines that have effects (side effects) that have been found to help with MS symptoms in some cases. (this trial and error approach, see following paragraph, is standard operating procedure for doctors and MS patients, its not like going to Costa Rica for Stem Cell Therapy will be the first medical experiment I've done. Look up baclofen, klonopin, tizanadine, zoloft, oxytrol, detrol, amantadine, flomax. )

Disease modifying drugs for MS did not exist for many of the years I had it and the options I have now will not fix the damage done. These drugs have helped some people but have some major side effects. Although stem cell therapy has the potential to slow or stop progression as do these drug options, its primary attraction to me is the ability to repair damage. Remember Christopher Reeves?

MS and me (The early years)

2009-02-08T13:14:00.000-08:00

OK, here's the not so short history minus the gory details:

When I was 29 years old (1986), and recently married, I was taking a really crazy class schedule, combining classes and student teaching in one semester to get my teaching certification. This included student teaching Chemistry, Honors Chemistry and Meteorology at a local high school. Toward the end of that hectic period I began to experience a mild form of double vision which was hard to ignore. After about three weeks, and several different doctor's visits, I ended up at a neurologist's office and after looking at me for about ten minutes, he declared very matter of fact that there was a 90% probability that I had Multiple Sclerosis. [In case you read this at work or children under a certain age read this, rest assured, the next four or five hundred thoughts that came into my mind are not appropriate to record here.] Knowing what I know now, its clear he made very safe bet, double vision at 29 years old is a classic opening salvo for MS. I did a very early form of an MRI (dark, noisy, and very confined) of my brain, a spinal tap and some thing where they hook your head up with electrodes and flash images and sounds (an evoked potential) and they were all non positive for MS. Since my vision had recovered, I put MS slightly below the panic level, having learned it wasn't a death sentence and having reviewed all my bad behavior, deciding I wasn't being scared into cleaning up my act.

For a few months, I was suspect of every twitch and tingle but went back to living a normal life. By the time seven more years had passed, I was almost ready to forget about it. Didn't make it.

Everything You've Ever Wanted To Know About Stem Cells

2009-02-06T18:32:00.000-08:00

Well not really, but perhaps..

There's just a lot of information on this subject and it grows everyday. In the near future, things will be done with stem cells that will change health care, the way things like immunizations and surgery have.

First some basic facts (from Wikipedia-where else?)

Stem cells are cells found in most, if not all, multi-cellular organisms. They are characterized by the ability to renew themselves through mitotic cell division and differentiating into a diverse range of specialized cell types. Research in the stem cell field grew out of findings by Canadian scientists Ernest A. McCulloch and James E. Till in the 1960s.[1][2] The two broad types of mammalian stem cells are: embryonic stem cells that are isolated from the inner cell mass of blastocysts, and adult stem cells that are found in adult tissues. In a developing embryo, stem cells can differentiate into all of the specialized embryonic tissues. In adult organisms, stem cells and progenitor cells act as a repair system for the body, replenishing specialized cells, but also maintain the normal turnover of regenerative organs, such as blood, skin or intestinal tissues.
Stem cells can now be grown and transformed into specialized cells with characteristics consistent with cells of various tissues such as muscles or nerves through cell culture. Highly plastic adult stem cells from a variety of sources, including umbilical cord blood and bone marrow, are routinely used in medical therapies. Embryonic cell lines and autologous embryonic stem cells generated through therapeutic cloning have also been proposed as promising candidates for future therapies.

In Costa Rica they don't use embryonic stem cells, the source of much controversy, but they use cells from donated umbilical cords and cells derived from your own fatty tissue. After testing for safety and compatibility the umbilical cord stem cells are cultured to grow large quantities of stem cells that are injected into your spinal column (like an epidural). These cells are injected to repair nerve damage and replace myelin lost to MS. This is done 6-8 times over a two week period and is accompanied by intense physical therapy, which is designed to "retrain" your nervous system.

Cells from your own body are cultured to grow cells which are injected intravenously and add a type of cell which is designed to modulate your immune system, which in MS is too active.

I'm more interested in the repair part and although there are numerous trials underway in the U.S., widespread use is many years away. In another post, I will relate stories from those who have gone and experienced improvement. The clinic makes no guarantees and my expectations are realistic, some see great improvement, some more limited and some not much, if any.

Added: I wanted to provide a little more detail on a MS stem cell treatment that has taken place in the U.S. This was designed to reset the immune system and consisted of extracting stem cells from your own bone marrow, using chemotherapy to wipe out your immune system and to then reset your immune system with injection of the stem cells. Although this did not repair damage already done and was effective in some cases, it was not always well "received" by the patients.

Stay tuned

Costa Rica

2008-12-11T13:12:00.000-08:00

What does Costa Rica have to do with anything? I'll have more about the country but for now a story. I spend a lot of time looking at a message board at MSWorld. Its a good place to go to get information about many different MS related issues, mostly from MS patients, people who understand and share the common experience. One category of posts I look at all the time is for Medications, since that's where new information is brought up and experiences with different medications and treatments, shared. (Funny you, you thought that's what doctors are supposed to do...)

Anyway I noticed a thread about a "Stem Cell Treatment in Costa Rica" in September, which I briefly looked at and about that same time Laura talked to one her oldest and best friends from Fort Worth who told her about meeting a woman who's husband has MS and who had just come back from Costa Rica where he had been given a stem cell the treatment and was experiencing positive results. Furthermore, they were friends with two other men who had both been down in May and likewise were doing much better. So I am now interested and go back to the thread on MSWorld which is growing bigger.

As I read it I am struck by a series of posts from someone using the "name" SanDiego Girl, who is actually a 36 year old named Holly, in Costa Rica getting the treatment and describing her experiences. For the first time I saw a glimpse of hope because Holly was real and talking in detail about the doctors and other medical professionals, what the treatment consisted of, the accomodations in San Jose (the capital of Costa Rica) and her very cautious reports of what was happening to her body. There's a lot more to the story but for those of you who are skeptics, like me, do yourself a favor. I am only interested in the stem cell procedure being done to treat MS by the Institute for Cellular Medicine in Costa Rica. You can read about many places that do "treatments", places like China, India, Mexico, Russia, Holland and people who have been scammed and had bad experiences. Yeah its a minefield but I had to look very hard because I didn't think Holly and Preston and Richard were liars and MS, if you have it, is not one of those things your mind can trick you into thinking is going away. Believe me, I've tried.

The Journey Begins with a Dream

2008-12-04T09:38:00.000-08:00

I will post more about my personal encounter with multiple sclerosis and I know everyone fights battles, many harder than mine, but for most of the time its been in my life, its been a battle that has mostly involved only myself and very close family and friends. And I want to keep it that way so I am going to greatly expand my circle of close family and friends.

Multiple Sclerosis probably won't kill you, but it can kill everything else in your life: activities you do for fun, your career, your relationships, your marriage and your faith. So along the way, I dreamed of being whole again and it was going to take two things: 1) to stop the damage MS was doing to my central nervous system (CNS) and causing me to lose function and 2) to repair the damage already done to get back as much as possible.

Most treatments for MS that don't involve managing symptoms (such as fatigue) are designed to slow progression of the disease or the number of attacks. This usually involves suppressing the immune system which for reasons not completely known attacks the myelin sheath surrounding your nerve cells in your CNS causing them to "short circuit". Not much has been done to repair damage, but one area of research that may help with both is using stem cells. For a very long time, I have known this and I have waited, until now.