HSCT Non-Responder and Fighting Progressive MS through Alternative Means

As you probably gathered by now, I am a very open person.  That being the case, I wanted to share that I did not respond to HSCT, the treatment I completed in October 2018 to halt multiple sclerosis.  Approximately one out of every five recipients of this treatment does not respond.  I was in a group of six other people receiving this treament at the same time and as of today, I am the only one I know of who did not respond.  How do I know I did not respond?  My walking has been getting progressively worse since March 2019.  For the first six months or so into my decline, I had hope things would turn around, but they did not.  

What does that mean?

Let me be completely blunt.  It means that my disease may not stop until it kills me.  That is the harsh reality of multiple sclerosis (MS) that I do not believe people talk about much. 

Would I still recommend HSCT?

ABSOLUTELY!!!  I wish someone would have told me how important it would be for me to have this treatment early on in the course of my disease. 

I have personalized license plate to help spread the word.  My only fear is that my outcome may make some people skeptical of this treatment.  Please do not be skeptical. It has given so much to so many people.

What am I doing now?

I am taking so many vitamins it would make most peoples' heads spin.  This is normal for me, though (proudly consuming a vitamin's store's worth of vitamins since 2012 from a store named Sundrops in Dallas, Texas - they do phone consultations).  I updated my vitamin regime in November 2019.  Below is a list of them in case you are curious.  The vitamins I take are based both on my 23 and Me DNA test results and the fact that I have MS.  I am taking an extra fish oil and an extra vitamin D over what is listed below to mimic a study done on a different course of MS than the one I have that was shown to improve MS symptoms.  There is also vitamin D in at least one of the other vitamins I take, so let's just say, I'm taking a @#$%load of vitamin D.

I am still working out six days a week.  I have an amazing trainer who has been designing workouts to help me build strength in my areas of weakness (let's just say that's my legs all together).  I did join The MS Gym to see if there is more I can do and the good news is I am already doing a lot of what is taught on the site.  I will add more to my routine based on what I learn there.

I just had my first neuromuscular massage in years and plan to stick with those for a while. To read more about neuromuscular massage click here:   Neuromuscular Massage.

I started taking the generic form of Ampyra, dalfampridine.  Dalfampridine is a drug to help people with MS walk better.  It completely changed my walking for the better (you would think HSCT worked).  It has a low efficacy rate, so I am very lucky it works for me.  

Speaking of lucky, I consider myself the luckiest unlucky person I know.  My spirit would not be as high as it is if I didn't have an AMAZING husband, supportive family, and friends.  I also only have pretty much one MS symptom (poopy walking - I managed to either not get or overcome any other MS symptoms) and I believe that to be because of everything I have been doing.  I have a wonderful employer who has been flexible with me as I navigate through this disease.  Working full time is a blessing because it keeps my brain active and it allows to have money to spend on all of these MS adventures I keep going on.

I have tried many more things (and looked into much more) not listed here and not everything is rosy, but it's not my way to be full of doom and gloom.  Next up is Qigong and essential oils.

I have accumulated a ton of assistive devices to prepare for what may come.

I will continue to update my blog and have high hopes that my "never quit" attitude will lead me down the path of halting this disease on my own.

Month +10 through +12 following HSCT/Bone Marrow Transplant

My first year of recovery from Hematopoietic Stem Cell Transplant (HSCT) has come to a close and my summation is I am different, but not better, which is good.  Let me explain.  I can still walk, but not as far as I did after chemo in Mexico (Clinica Ruiz) nor my first four months being home from Mexico.  Based on information I have read, I have another year of recovery, so things could still change for better or worse.  It's also very important to remember HSCT's sole purpose is to halt MS in in it's tracks.  Symptom reversal is a lucky benefit some recipients of the treatment experience. I did get an MRI this month (October 2019) just to get one and I have had no changes as far as more lesions  (in my brain and all over my spine) in four years.  I wish that meant something, but the way Primary Progressive MS works for me is that my disability got worse while my disease did not change.

The following are the items that changed for the better a year ago and have remained better post HSCT*:

*Note: After posting this blog post, I found out I did not respond to HSCT, so the benefits listed below are likely a result of something else I did to try to beat MS

• My knees do not snap to a rigid straight leg like they used to when I walked, which caused constant pain in the back of the knees.  

• Another "gone after HSCT" item is that my knees bend when I walk down the stairs.  It is not easy for me to walk down stairs, but it is much better to have my knees bend.

• Bladder frequency went and has not returned.

• Bladder urgency is sporadic and seems to be due in part to sitting with a tilt (I've done some very scientific testing 😉).

Housekeeping Items

• Something very insignificant, but interesting (to me at least) is that my eyelashes are still not on a regular growth pattern due to chemo, so every three months the older lashes fall out, the new ones are already there, and it takes about three weeks for them to grow back out.

• The physical rehab I did in Jacksonville, FL at Brooks Rehabilitation with HAL from July to mid August 2019 had a good lasting effect on my walking gait and I do not fall as much or as often as I did prior to rehab.  I used to fall about two times a week and now I fall about two times a month!

• I still work out six days a week, which I believe is how I have been able to keep going. It's like having a non-stop rehabilitation program.  I am working out with a trainer/doing the trainer designed workouts to target my hip flexors (my one area of weakness)  as well as overall body strength at the same gym I have been going to for years.

• I am waiting to start Ampyra/find out if I can.  My Blue Cross Blue Shield of Texas insurance does not want to cover it and it's not affordable otherwise.  Click here to learn about Ampyra.

• I love my Segway Ninebot S with handlebar!!! It's a game changer for me.  Click here to go to Segway's website.
  

I manage to keep my thoughts pretty good by constantly reminding myself of everything I do have and how much I'm still able to do even if it's considerably limited compared to who I was 2016 and prior.  2016 was my last "good" physical year meaning I could still kind of get around on foot most of the time without any help).  I have also instituted a new mantra, "I am in control of my body".😂  You see, I always have hope and surprisingly, an abundance of patience.  

Hair at 10 Months Post HSCT

Hair at 11 Months Post HSCT - Dried Curly with a Blow Dryer

Hair at 12 Months Post HSCT - Naturally Dried VS. Blow Dried with a Straightening Product and a Round Brush

A Tattoo with Meaning

For my one year post HSCT birthday and as a tribute to my amazing mother who passed away on June 7, 2019 from a long battle with stage 4 non-smoker lung cancer, I got my first tattoo!  My mother was a Pisces, loved, fish and the ocean, so I had an ocean scene tattooed on back between my shoulder blades. The tattoo is a perfect circle, but appears not so in this pic and it's good size (go big or go home 😁).  My dad asked which animal he is and which my mom is. I said the turtle is him and my mom is the fish.  Then I looked up the meaning of both of these sea creatures for tattoos and what I found was perfect!  Turtle tattoos are considered the symbol of calm, patience, wisdom, and firmness.  They are the sign of longevity. The fish symbolizes strength, determination and adversity.

Month +7 through +9 following HSCT/Bone Marrow Transplant

I wish there were all kinds of great stories to share about my physical success post HSCT (bone marrow transplant), but it seems I'm in a holding pattern when it comes to walking (extremely weak hip flexors - I can walk only short distances without a break.).  This is basically my one and only multiple sclerosis (MS) symptom since my bladder frequency reversed (thanks to HSCT!!!).  Due to at least one symptom reversing, I consider HSCT a success and my disease halted! Ok, I still have bladder urgency sometimes (it's getting less and less with each month that passes post HSCT), but I will take sometimes over all the time.  I consider myself  very lucky to have had primary progressive multiple sclerosis (PPMS) for ten years (officially diagnosed seven years ago) and have been only affected significantly in one area.  This course of the disease is a disability nightmare for pretty much everyone.

 As a reminder, there is a 78% chance HSCT will halt MS in its tracks and out of those 78%, 41% see symptom reversal. Lest we not forgot I'm only nine months post HSCT and "they" say there is a one to two year recovery period from this procedure, so I'm still in the early stages of recovery.  Because I consider my MS to be halted, I moved on to physical rehab to start seeing what I can do about my walking, specifically my gait for now. Yes, I did walk better and farther following my second chemo treatment.  The way I walk now is still different/better than it was before HSCT, but not better than it was my first four months post HSCT.

I am currently in Jacksonville, Florida for six weeks of physical rehabilitation at Brooks (https://brooksrehab.org/cyberdyne/).  I chose this rehab after another HSCT warrior and his wife started posting about being here to use HAL (to learn more about HAL, see:  https://www.cyberdyne.jp/english/products/HAL/index.html).  Brooks is the ONLY physical rehabilitation in the United States using HAL at this time.  I am working full time while I'm here and consider the combination of rehab with working the hardest thing I have ever done in my life.  Rehab is not for sissies!

Here are some videos of one of my recent rehabilitation treatments (I have been walking for 45 minutes a session switching between a pace of a 1.0 and 1.2 - this is three weeks into my six weeks of physical rehab with HAL)...

Fun Fact:  The founder of the company that created HAL, which is in Japan, is a huge movie buff and the company name, Cyberdyne, is from the movie, Terminator, and HAL, the robotic device I use is named after HAL, the computer (HAL 9000), from 2001:  A Space Odyssey.

Miscellanous Items...

• I am still unsure if I'm going through menopause or not.  I'm getting mixed messages from my body. 😃
• My eyelashes are still not on a good cycle, so I'm down to stumps for the third time in nine months.
• I fell for all the Alinker (walking trike video below) hype after actress Selma Blair (who has MS) kept posting on Instagram about hers, how she loves it, and how it helps her get around.  I'm lucky to get 20 feet on this thing.  However, I'm keeping it and will keep working on using it better. Currently, this is how I'm using it and that is NOT at all how I should be.

• I have had pimples or at least bumps on my right side of my face for nine plus months.  They came on during HSCT and never left.  I will be seeing my dermatologist when I get back from rehab.
• I completed five sessions of emsculpt prior to leaving Dallas for rehab (https://bodybybtl.com/solutions/body-contouring/emsculpt/ ) on my glutes and quads to help with the muscles used for walking.  I am still waiting to get the full effects of this procedure, but I am hopeful it will help with the rehab and beyond.
• In 2018 (before HSCT), I tried  Ampyra (named Fampyra outside the US),  https://ampyra.com/, a drug whose sole (ooh a pun) purpose to is help people with MS walk better.  It worked very well for me, but my insurance would not cover the medication without me being on a disease modifying therapy for MS.  My neurologist repealed the coverage denial twice, but insurance did not budge.  I will be talking to my neurologist about this drug again when I see him at the end of September and see if he will prescribe it.  If so, I will take it to a place near where I live to be compounded to get around the insurance issue.

This quarter of recovery's hair growth...

Hair at 7 Months Post HSCT

 Hair at 8 Months Post HSCT

 Hair at 9 Months Post HSCT

Month +4 through +6 following HSCT (AKA Bone Marrow Transplant)!

This was the second quarter of my recovery form the Hematopoietic stem cell transplantation (HSCT) I went through in October/November 2018.  As a reminder, HSCT is an intense chemotherapy treatment for multiple sclerosis (MS). It aims to stop the damage MS causes by wiping out and then regrowing your immune system using your stem cells.

This was a bit of a rough quarter.  By rough, I mean my walking has been as bad as it was before I had HSCT .  It is how it was for me pretty much all of 2018.  I walk like a drunk Frankenstein and often move like a shopping cart with a wonky wheel.  While it is frustrating and has caused about 10 falls, it did not stop me from doing everything I normally do.  Also, thanks to the graph below I am not worried about what happened over the last few months.  This graph gives a simple picture of the average recovery cycle from HSCT.  According to it, the past three months should have been the roughest. 

  
There is only a 41% chance for treatment responders to have symptom improvement.  I knew this going in and was not concerned because my main agenda was to halt MS, which there is a 78% chance of happening.  I AM NOT WORSE THAN I WAS A YEAR AGO!  That is the silver lining!  

My walking may not be changing, but my hair is.  Please see below for how it changed this quarter.

Hair at 4 Months Post HSCT

Hair at 5 Months Post HSCT

Hair at 6 Months Post HSCT - My naturally very curly hair is back!

7-Year Anniversary of My Multiple Sclerosis Diagnosis (March 13, 2012)

Today marks the 7-year anniversary of my multiple sclerosis diagnosis. What started out as “not being sooo bad” in 2012 turned into “omg, I have to stop this or it is going to ruin my life” in 2018. Hopefully, the HSCT (chemotherapy with a bone marrow/stem cell transplant) I had in October 2018 has stopped this. I tend to lean toward sharing positive accomplishments but I would be remiss if I did not share how progressive MS has affected my life. Here are the highlights...

*I lost my ability to run and climb down stairs without holding a railing (I climb down them still holding a railing and moving very slowly) in 2012.

*2014 was my last year of having what I would consider a “normal” walking gait.

*August 2016 was the last time I went on a vacation where I didn’t need any assistance walking.

*2017 and beyond walking any distance became an arduous task. I lost my ability to jump like I used to and at least a few other things.

*In April of 2018 on a vacation tour with mostly people in their 70s, I could not walk as well as anyone on our trip. More than one person said they would pray for me and others felt sorry for me (sometimes you cannot tell through social media how bad someone is 😊).

*Throughout all of these years I have tripped more times than I can count (about one third of these episodes resulting in me falling). The tripping is a result of how I walk.

*I have cried out of frustration a handful of times usually after falling and feeling like I do not have any control over my ability to get from point a to b.

*I have acquired anxiety about walking from my car into any building/event.

I am so thankful to have had HSCT and have hopes of celebrating future anniversaries with accomplishments. What I am pursuing now is working on getting my gait/strength better. I am working with a trainer/coach at my gym who has put together workouts that focus on my areas of muscle weakness (hip flexors, glutes, hamstrings, and then some). Also, I am taking delivery of the Alinker (https://www.thealinker.com/products/the-alinker-r-volution) “walking bike” on Monday, which should help with this endeavor as well. Please keep in mind that I am pretty good compared to most people with progressive MS and am about to hit my five year anniversary of CrossFit, which I believe has helped me more than I will ever know (adapted as I declined and lost ability through the years).

Progressive MS is a very nasty beast!

Day +13 through Month +3 following HSCT

The First Three Months Post HSCT (Chemotherapy and Stem Cell Transplant) at Clinica Ruiz in Monterrey Mexico

If you are unfamiliar with what has been going on in my life prior to this post, please read the previous five entries on this blog to gain a full understanding of what I have and am going through.  

Please note:  I am 43 years old.  I was diagnosed with multiple sclerosis in 2012.  I likely had it a few years before that.  My disease is progressive and started getting noticeably worse year-after-year starting around the end of 2014.  By worse, I mean my ability to walk kept declining and today, I cannot run, period, have trouble with jumping, walking down stairs, trouble with walking, and when pretty much trying any repetitive motion using my legs.  I can do it (except running) in small doses.  It just takes a bit of effort mentally and physically.  I worked out through my entire decline and modified as I was not able to do certain movements any longer.  The important part is I NEVER STOPPED.

The Expanded Disability Status Scale (EDSS) is a measure the disability status of people with multiple sclerosis.  The link below explains it fully.  I do not feel I fit the scale well, unfortunately, so I will not give myself a score.  My one main issue is walking/gait while the very little else that is going on is minor in comparison.

https://www.va.gov/MS/Professionals/diagnosis/Kurtzke_Expanded_Disability_Status_Scale.asp

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I will be posting blog updates every three months to document my post HSCT recovery experience. This is the first post since coming home from Clinica Ruiz in Monterrey Mexico.

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On Saturday, November 10, 2018, the 13th day after my stem cell transplant, Steven and I took the extremely long one hour and 20 minute flight from Monterrey (where I received HSCT at Clinica Ruiz) to Dallas 😊.  Luckily, neither the Monterrey nor Dallas airports were crowded and plane ride was short because I opted not to wear a mask as had been suggested to help protect me from germs.  You will learn as you read through this post, I am more comfortable than most with calculated risk. 

When we arrived in Dallas, Steven and I had about a mile continuous walk to get to customs.  That was a bit tough for me (not to mention I was anemic at the time).  While my walking is better, it's still pretty bad. I made it with a couple breaks.

I LOVE being back at home.  It was so delightful to return after 28 days away.

On Monday, November 12, 2018 (a day and a half after I returned to Dallas), I went back to my gym (six days a week) and started working full-time from home.  This is not typical of person who just returned home from HSCT, but it was my life before and I thought it would be best to get back to routine (especially exercise) as quickly as possible.   I also felt great and had full energy (not sure how). 

Much to my surprise, it was not hard to get back into CrossFit and Olympic Weightlifting.  I feel that HSCT was more confirmation that my four plus years of continuous workouts make a huge difference in my overall well being.  I was and am very careful to not put my hands near my face unless I have just washed them because in spite of my behavior, I do understand I have a compromised immune system.

The following lists include the good, the interesting, and the not so good things that have happened since I have been home through my three month stem cell transplant birthday.

The Good

• I returned to ALL of my LIFE!

• My walking and other movement is a little better. I have not attempted to walk any kind of distance since I have been home, which is where MS has taken the most from me.  When it gets warmer, I will.

• After working at home full-time for seven weeks after I got home, I returned to work in the office full-time.

• I had and continue to have full energy despite returning to my old bad sleeping habits of going to bed between 10:00 PM -11:00 PM and waking up at 4:15 AM (for 5:00 AM workouts).

• I regularly eat at restaurants, which the doctor at Clinica Ruiz said was ok as long as I do not eat raw food.  I am smart about this regarding where and when I go and extremely lucky to live in a city like Dallas that has a lot of quality restaurants.  Most people do not go out to eat for six months post HSCT and is what is recommended.

The Interesting

• I didn't lose my eyebrows and eyelashes, per se.  From what I could tell, they stopped growing for a time, thinned, and then started to grow around the end of November 2018 and finished growing in around the beginning of January 2019.

• My hair is growing back exactly as it was thin spots and all.  I will likely have the slowest hair growth of most who have had HSCT.

• The right side of my face and only the right side has been breaking out since I was in Mexico. It is highly likely from the bactrim or the acyclovir. I am on acyclovir (anti-viral) bactrim (anti-batcterial) for three more months (total of six+ months).  Thankfully, the breaking out is mild enough that an at home microderm abrasion tool fixes it.

• The blood levels collected on a CBC (complete blood count) and CMP (complete metabolic panel) along with other tests tend to go up and down after HSCT.  I had my blood tested at one month post transplant and I was still anemic and lower/higher on some things than I should have been, which is to be expected for up to two years.  I had the second round of tests done after two months and the levels started getting better.  I will get my third test today.

The Not So Good

• I have fallen a handful of times since I have been home.  Most of the falls are from rubber-soled shoes and stupidity.

• I may be going through menopause from the chemotherapy.  I will not know for sure for a little while longer.

• I have developed  a smidgen of cold intolerance, so every time I go outside and it's cold, I get a little stiff.  There is a good chance this is temporary and as of me writing this post it seems to have gotten a little better already.

I am not working with a doctor here and will not see my neurologist until much later this year.  I get blood tests from my doctor's (general practitioner) office to see how I'm doing and if my doctor needs to see me, she will say. I was regularly doing this before HSCT, so this is not something new for me.  I am still taking a boatload of vitamins.  Some of which I introduced to help me recover from HSCT.  I will take the blood test results from my three month post HSCT blood tests to Sundrops, THE vitamin store https://sundrops.com/, to determine what I should change to help any levels that are too high or low.  I have been going to this vitamin store since the day I was diagnosed.

Since I only exhibit one main MS symptom (mentioned earlier in this post), I wanted to share the following list of MS symptoms from the National MS Society website that are common in many with MS. Please click this link, https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms, to learn more about these symptoms and the less common ones (not listed) along with explanations of each, so you can see what others are dealing with. What I have seen and heard is nothing to be trifled with regarding what people live with who have this disease.

•  Fatigue
•  Walking (Gait) Difficulties
•  Numbness or Tingling
•  Spasticity
•  Weakness
•  Vision Problems
•  Dizziness and Vertigo
•  Bladder Problems
•  Sexual Problems
•  Bowel Problems
•  Pain
•  Cognitive Changes
•  Emotional Changes
•  Depression

There is something called The Roller Coaster that happens to most people who go through HSCT.  To be honest, I do not fully understand it/have not gone through it, so here is a website that explains it.

https://multiplesclerosisnewstoday.com/2017/01/05/phoebes-hsct-story-back-home-last-series/

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Please find pictures and videos below showing some things that have changed for the better.

Hair Growth at + 1 Month

Hair Growth at + 2 Months

Hair Growth at +3 Months

October 2018 - Before HSCT

January 2019 - +3 Months after HSCT

Climbing Stairs with No Railing (Daily Practice)

Until next time...