My Fight with MS

Fleas on my middle toe?

I am still feeling well. I did not know the days were this long. When you average 11-12 hours a day sleeping and back to 8.

It is a unique situation. My spinal cord after the last treatment felt hot. Today it is still feels warm. My left middle toe started itching and it is still itching. Maybe that toe has fleas?

Before this started I had zero feeling with all 10 toes. My left little toe is normal and the middle with fleas. My hands also have more feeling. I would stumble and occasionally fall about 20 times a day and now I have stumbled 3 times in 11 days.

I feel different in this skin. I'm not sure what it is but the quality of life has improved. I feel like I watching 20/20 or 60 minutes except I'm in the show instead of watching.

Thank you Lord Jesus,

Richard

Our return

On Saturday, Richard and I returned from Costa Rica and were met by our loving wives and folks from a local MS support group, of which I am a member.  What a homecoming! 

Richard and I felt we came full circle from the men we were just 15 days ago! 

The therapists at Cima hospital gave us some exercises to continue working on our flexibility.  The head therapist said the exercises will complement the work of the stem cells.  We will be doing everything possible to ensure our health is continually improving.    

We are greatly appreciative of the time it took for you to review the blog and post the comments.  We always felt this was a venue for sharing some valuable information for we victims of MS and other diseases.  We hope we accomplished our goal. 

If you have MS or some other health issue, we hope you are going to be proactive and try something before your health deteriorates any further.  I would strongly encourage each of you to avoid a time when you are looking in the rear view mirror and wondering what could have been. 

If ICM is not your choice, conduct a lot of research, talk to some former patients and talk with the physicians in charge of your treatment.  Make your best decision and GO FOR IT! 

We will continue to post to this blog on a weekly basis so you may have all of the information available from our standpoint.  We can't say this is a cure but we would both do this again ........tomorrow if needed.

If anyone is interested in talking with me personally, feel free to email me at pwalker2644@sbcglobal.net 
Take care,

Preston

How our experimental treatments began

The faith we have in Jesus led Preston and I together, showing us the way to Costa Rica.

After listening to all the physicians here, we feel the ICM clinic is ahead of the world in their treatments. They virtually know the stem cell clinics across the world. Several confide in ICM to manage their own clinic.

One of the first physicians hired here was from the China clinic, but he was terminated because of his lack of patient care. These physicians are cutting edge, as are the two treatments they're trying on us that have never been tried before.

The doctors were 100 percent confident the treatments would work but refused to try it on any patients until the right ones came in. Then Preston and I arrived and happen to catch the three main physicians and the owner, who has a doctorate in biology and years of in-depth work in cells.

It was the opportunity to push them.

This push to them came to me in a prayer two weeks before we left. So in our impromptu first day meeting I asked if they have something new they wanted to try. I could see the face of the owner; his wheels were churning,  but he really did not say  much.

So I pushed a second time, stating that we are available for you to try an extended or more intense treatment, for this would not only help us but other future patients as well. So then I looked at Preston and he gave me an OK nod. Give Preston credit; he is here with me to help others for the long haul.

I know the owner was thinking, "Who is this old nursing home administrator guy volunteering me into unknown treatments with people I just met. I know he has MS but he is also crazy."

I gave it a third try: I told them we are here to receive a stem cell treatment but are offering ourselves for your experimental treatments.

By now the physicians are silent, thinking so deeply on what may lay ahead and how to make it work. So I gave them the clincher.

I looked the owner square in his eyes and told him, "The only thing stopping you is you."

That was it. He started talking to us about the fat-derived stem cells that would be extracted out of our bodies, cleaned many different ways for five days and re-introduced back into our bodies with other chemicals, injecting us with 60 million stem cells. If successful this would shut down the overly active immune cells.

One of the physicians said, "I don't see how it can't work."

I looked at Preston; again he told us OK.

The physicians started talking  on how to proceed with this. A new treatment was developed and another one revised so we could have both during our 13-day stay. We offered to stay longer if needed.

The owner said let's see if we can make this work in the time you are here.

So this is how this immune stem cell treatment was developed and 10 doses of intrathecal stem cell injections in 5 administrations.

Both had never been tried before, according to the ICM clinic owner, who has his hand on the pulse of stem cell clinics and hospitals worldwide.

This did not happen by luck. God led us, so we simply listened and followed. Really nothing more.

In Him,

Richard

Why we have bruises

On Wednesday, when we went to Cima hospital for the IV injection of the experimental stem cells and our spinal infusion, we were able to speak with the CEO, who gave us permission to tell you what we know about the experimental treatment.

Last Saturday, I spoke a little of the treatment and a big bruise.  The bruising was from a mini-liposuction.

A plastic surgeon made three incisions on me and two on Richard to remove the fat.  I was told we would bruise quite a bit because, "You're skinny."

I wanted to ask him if we were talking about the same person here ... but I didn't.

Richard received two incisions because of the little inner tube around the middle, but now it's a little deflated.

Anyway, last Saturday stem cells were removed from the fat tissue.  The cells were treated and will be injected in two doses, 30 million stem cells each. 

The next one will be on Friday. 

Richard told you in a previous post about something that happened that was a little different for both of us when Dr. Lara was injecting the stem cells IV.

I felt a little warming sensation around my right elbow.  Within a few seconds after the warming sensation started in my elbow, I felt it on my brain too!!  It was an entirely encompassing feeling, not localized in any way.

Richard felt the same sensation but was more localized to the left part of his brain.  We were both very excited when we began talking about it, as was Dr. Lara!

He said it was from the stem cells reaching the needed areas of the brain for repair!

Following the IV treatment, we received another spinal stem cell treatment.  No pain this time.

Since last year, when ICM started 5 IV and 5 spinal, the spinals have been 4.5 million cells each. Since we are the guinea pigs for the fat derived stem cell treatment they have changed the spinal injections also.

They are certain we are the first in the world to receive 9 million -- a double dose -- of the CD 34+ and mesenchymal stem cells in one 30-second infusion.

The physicians feel very confident there will be no side effects along with super success. We feel the same way but only God knows.

Richard and I feel really, really, really good!

Feeling like a guinea pig

Today was a really big day.

We received the intrathecal [spinal] injection. We were told today instead of 5 IV and 5 intrathecal injections we would instead receive only 5 intrathecal, but double doses. Instead of 4.5 million CD 34+ and mesenchymal stem cells we receive 9 million. Again they informed us this has never been performed.

Boy, you talk about a guinea pig. Shoot, I may squeal the rest of my life. Then, we are the first in the world to receive 30 million of our fat-derived stem cells. We still feel great and I have yet to take a pain pill in 5 days. Thank you Lord Jesus.

This is truly blind faith. I don't know what else to say but thank you for the prayers and gifts.

One the first day of treatment, I had this buzzing on the left side of my head and again today right after the treatment. Preston also had it but in his entire head and elbow. Maybe he has brains in his elbow?

With a very humbled heart I say thanks again!

Love,

Richard

A machine that counts stem cells!

Tuesday was a fairly easy day. At 1, we had some more physical therapy.  The pain in my back is still there. Veronica, my drill sergeant, used some electrodes today.  That helped some.

The medication Dr. Lara prescribed is called Enantyum in 25 mg strength. I have no idea what the translation is.  We were told this is both an anti-inflammatory and a pain medication.  We were told to take one of these every 8 hours as needed.

Richard hasn't needed any of it, but I'll end up using everything they gave me.

On Wednesday at 1 we have some more physical therapy and the IV injection of the immune modulating stem cells along with the stem cells meant for repair.  It will be somewhere in the neighborhood of 30 million stem cells.

Believe it or not, when they give you a number of stem cells, they actually have a machine that can count the number of viable stem cells that will be used for the injection.  That, to me, is somewhat amazing, because the machine is actually able to count microscopic organisms.

I always wondered how they would actually know how many are injected.  Now, we all do. We will receive another 30 million on Friday.   

I'll keep you posted.

More therapy, more injections

At 1 p.m. on Monday, we went through another round of physical therapy.  Monika and Angie at the physical therapy portion of CIMA hospital are very good.  They are very compassionate about what they are doing and how they are treating the patients.  This whole treatment process has just been one positive experience after another.

At 3 p.m., we received another stem cell injection. One batch of these stem cells are immune system modulating.  In my terms, the immune system is being kept at bay while the other batch of stem cells are doing the repair.

It will take several months for us to actually see results from the rebuilding of the myelin sheath.  We were told today that the positive effects we have felt thus far is just from the stabilization of the immune system. I can't wait until actual repair takes place!

The other day, Dr. Lara prescribed some anti-inflammatory and pain medicine to both of us. I thought ... I haven't had any yet, this may be just another container of medicine I will carry around.

Well, I found out today what the medicine is for. Post transplant, I had a shooting pain from the injection site all the way down the back of my knees. Once I made it to the hotel, I took one of those pills and felt a lot better after a couple of hours.

Richard isn't having any pain from the injections or needed the pain medication for the symptoms related to his version of MS. This has been huge for him.  He was taking a bunch of pain medications to get by. 

Until next time ...

Less fatigue, better balance, a note from Richard

This is something Richard sent to me and thought I would share it with you.  He has had some pretty dramatic improvements. 

As for me, my cognition is more clear. My balance is steadier.  My fatigue has lessened. This fatigue deal was pretty tough. I used to sleep for a long time at night only to want a nap at 0900 hours. It was pretty bad.  It never really made me so tired that I was falling asleep at any time, but it was just there.  We have another week of treatment to go!

From Richard:

I am having a little trouble with my words now but the following is the reason why.

1. This is the second day I have not had a pain pill! Could this be the end of it?
2. My left shoulder and arm have quit hurting.  I can sleep on the my side where as I could not before.
3. I have regained feeling in my left little toe.
4. Not as fatigued.
5. I don't know if my cognition is better, but I think so.
6. I have not lost my balance today, not one single time.
7. Spasticity is definitely better.

GOD IS GRREEEAAAAATTTTT!

How about those apples!!!!!!!!

Biggest bruise in my life

Well, we participated in part of the experimental treatment today.  We were told  this part of the treatment was going to be a little painful and cause some bruising. They haven't misled us at all during this treatment and this was no exception!  I have never seen a bruise that big in my life!  We have at least 24-square-inches of outstanding color, but it's not a sharp pain, so no big deal. Richard has been in pain for years and to him it was a ant bite. Nothing ventured, nothing gained, right?

We were in CIMA hospital for a couple of hours.  We were released after the "experimental" part of the treatment only to return at 3 p.m., when we underwent our second stem cell treatment.  Again, no difficulties. 

I'm no different than any one of you.  I was a little concerned about the potential for pain from these needles.  Just the size of those needles cause me to get a little nervous.  They didn't cause a lot of pain during my initial diagnosis but enough I have never cared to consider another spinal injection.  I am really glad it didn't cause a whole lot of pain because the doctors went at my spinal cord three times before they used the X-ray machine to "guide" the needle to the cord.  On the fourth try, success was had. I'm not taking a dig at the U.S. doctors, that is just what happened.

I told the physician on the first stem cell treatment about the difficulty that the doctors had at the time of diagnosis.  He said not to worry because the needle used to withdraw fluid is larger than the needle used to insert fluid.  He was able to find my spinal cord within seconds and inserted the stem cells.  Folks, this same physician injected stem cells again today and did it all within a minute.  This minute includes the time it took to him to use anesthetic on the site. Richard doesn't even flinch when the needle is inserted, and they have to tell him when they have finished. 

At this point, I need to compliment one of the physicians on staff at the Institute for Cellular Medicine.  His name is Dr. Fabian Lara Maier.  I have never seen a physician more attentive than he is. 

Every time I needed something from him, I just waved at him.  He didn't casually walk over to me.  The man walks very fast to address whatever concerns you have and is genuinely interested in what you say. He has even stayed after our treatments to make sure our taxi driver made it to the hospital for transport back to the hotel.  He is the most courteous and professional physician I have ever seen. He is also has an M.D. from the U.S.

The stem cells are brought over from the clinic by.....you guessed it - Dr. Fabian Lara Maier.  He brought it over in his cooler.  Again, it was very comforting to know Dr. Maier is interested enough in quality control and his patients to do the work himself.  Another example of the emphasis on quality care is his constant attention to the physician actually doing the work and his sharing of information with the treating physican and us.

Physical therapy a part of the process

We had another round of physical therapy, and I'm being told my core is not strong enough. My drill sergeant, I mean Monika, is running me through the rigors of improving my balance.  She also gave me a bunch of post-workout stretching exercises.  I needed them. The only stretches I have done were the ones I did while playing football in the seventh grade. The stretching exercises have really changed!
Richard was going through his therapy at the the same time.  He was also standing on the ball but was able to lift some barbells while standing on this thing.  I don't know the name of this little jewel but it was like a round piece of 2" thick wood on top of 1/2 of a ball.      
Saturday morning, I will receive a different experimental treatment followed by another stem cell injection in the afternoon.  I will tell you more about this treatment in the near future.  The CEO of the company said Richard and I are the first ones to have gone through this one, possibly in the world.  I am very excited about it, but I owe it to him to ask permission before I say anything else about it.

Preston Walker