HSCT Non-Responder Life with Progressive Multiple Sclerosis +22 Months through +24 Months

Reflections on the Last Two Years

24 months is the average length of time generally accepted as the time it takes someone's body who underwent  HSCT to fully recover.  According to blood tests, I recovered fully three to six months post HSCT, but as you know if you have been following my story, there was no halting/recovery of my multiple sclerosis.  There was that time right after HSCT, I thought I would stop declining and even improve physically, but as previously posted, that was only for a four-month timeframe and then I started physically declining again and I continue to decline. 

After these last two years, I came to the conclusion I had far too much nerve damage going into HSCT to have ever had a lasting positive outcome from it.  Like I have said in previous posts and to many people living with multiple sclerosis, it is extremely important to have HSCT early on in the course of your disease.

Incredibly, hope is alive and I have not given up.  I am still working out with trainer designed workouts.  I continue to modify the movements as needed.  I am working full time (from home), and I go on many adventures too. Things are much harder to do is all.

Still Saying "No" to Drugs with One Exception

Ocrevus, the only multiple sclerosis drug that MAY halt progression for an undetermined amount of time, is not something I am interested in taking.  All of the drugs for MS tend to have low efficacy rates and undesirable side effects.  To me, the risk outweighs the potential reward.

After a long hiatus (approximately 9 months) from Ampyra, the drug whose sole purpose is help people with multiple sclerosis walk (there are zero other drugs offered that do this for MS), I decided to take the left over pills I have from the last round of taking Ampyra to see if anything happens.  The best I can tell is the drug is helping minimally, if at all.  Of course, when I run out, I am uncertain if I can get it/afford it.

My personal belief is that unless scientists and doctors find out how to repair myelin (protective nerve covering) all of my nerves with damage to the myelin are just like electrical cords that have been partially severed and are no longer performing well or at all.  Think of an old electronic piece of equipment getting worse as it ages.  The same is true of my faulty immune system, I am getting worse as I age. I do believe in the importance of  maintaining a top level of health, but not sure anything I am doing will halt my disability progression/heal my damaged myelin, the cause of my physical decline.

The Latest 

I am working on a heavy metal detox along with a vitamin D protocol that may help, but needs a bit of time (like months to years) to figure out if it is helping me in some way.  I have been working on this since the end June.  I am still trying to get all the vitamins right for me.

I am using TaoPatches again to see if their if their nanotechnology to convert your natural body heat into "microscopic beams of light" that heal your body is effective at all.  They were once back in June 2020, but now not sure they are doing anything, but I am still wearing them in case something clicks.

I remain without anger about what has happened to me, but I do get scared, anxious and frustrated, which results in crying, but other than that, I manage pretty well. Ok, I can ONLY say that because of my amazing husband!  He does SOOOOOOOOOOOO much for me and as a result I live a pretty normal life.

I, according to two different doctors, have permanent nerve damage in both lower legs (knee down through the feet) and it is NOT dropfoot, which I may have called it in the past.  It is hard to explain what this nerve damage is like, but it makes it really hard to lift either leg and that is the disability that was mounting over last couple years and thought it was weak hip flexors.  I cannot believe after all of this time I am still trying to figure out what is going on with my body.

The Future

I have spent the last two plus years documenting my experience before, during, and after HSCT/living with progressive multiple sclerosis.  I plan to continue, but going in a slightly different direction. My greatest joys in life come from spending time with people I love doing what I love; learning, traveling, and eating (not necessarily in that order), so I plan to write about doing those things with progressive multiple sclerosis.  Of course, if something remarkable comes along and I start to get better physically, I will definitely document that!

I may share some videos in the future to show people what life is like with a big disability.  However, it is sad and can be very depressing to see, so I shy away from those things.  I am not depressed and I would prefer that people reading my posts do not feel that way after reading them either.

Hair - Lots and Lots of Hair

Hair at 22 Months Post HSCT - When hair grows at the same time and rate from varying heights...

 

Hair at 23 Months Post HSCT

Hair at 24 Months Post HSCT - I straightened my naturally curly hair to show the growth from the time as bald until now with only two hair trims in 24 months.

The Full 24 Months of Hair in Review

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HSCT Non-Responder Life with Progressive Multiple Sclerosis +19 Months through +21 Months

The Hard Truth and Reality

I am continuing to FIGHT to stop the disability given to me by progressive multiple sclerosis, but I am losing the battle.  I am not trying to get better.  I am trying not to get worse.  Without stopping disability progression, I cannot entertain the thought of getting better.   

I do not walk at all outside of the home unless the distance is extremely short (like a few feet) and I can hold onto my husband.  Inside the home, I can only take between 10-15 steps with a walker.  I can barely lift either leg.  I found out in June 2020 I have permanent nerve damage in my right lower leg and foot.  Both feet drag on the floor and my balance is really bad.  I voluntarily stopped driving in May 2020.  I still can drive, but I cannot do anything by myself out of the car, so there is no point to me bothering with that.  I did get an AFO (ankle foot orthotic) in May 2020 for my right leg, but it only helps a tiny bit if at all, so I do not wear it regularly.

I am almost 100% dependent on my husband.  If it were not for him, I could not live independently.  I am still able to make it to the bathroom by myself, but there is very little else I can still do on my own physically.

As grim as that sounds, I am still fighting all day every day along with working full time at home (that last bit is a huge blessing). 

The following are my tried and true battle tools along with along with a couple new ones to fight for my present and near future.

• Exercise:  I am STILL working out six days a week (and have been working out continuously for over six years).  There have been a lot of modifications along the way, which is how I keep going.  My workouts continue to be designed by a trainer to maximize the benefit I get.

• Food:  Despite what my social media postings of food may make you think, I eat really well

• Customized Vitamin D Protocol with Michael Cawley (Michael's private group on Facebook:  https://www.facebook.com/groups/629001147449412/ ):  I started a vitamin d regime at the end of June 2020 with a gentleman in Ireland who has had a lot of success treating people with multiple sclerosis (including himself) with this protocol and giving them a better life.  We shall see if he is able to help me.  At the very least, I am giving my body a break from the absurd amount of supplements I was taking.

• Ampyra (https://ampyra.com/):   Is the first and only brand prescription medicine indicated to help improve walking in adults with multiple sclerosis (MS). 

I was on this drug twice in my past and it was amazing.  Unfortunately, when I started taking it for the second time in my life around the end of November 2019, it only worked for about a month and then it stopped working. I plan on giving it a try again pending the vitamin d protocol outcome.  Meaning if the vitamin d protocol helps, I will try Ampyra again. 

• TaoPatch (https://www.taopatch.co/): TaoPatch is a nanotechnology device that converts heat from your body into light, which it sends into your nervous system with immediate health benefits.

These patches are pretty amazing if they work for you!  I used the patches for five weeks and temporarily stopped when I started the customized vitamin d protocol mentioned in the bullet above because I wanted a "clean slate", so I would be able to tell if the protocol is helping. 

 

I had one miraculous afternoon during my second week of wearing the TaoPatches where I walked without assistance and with very little balance issues.  I did not have that same response again, however.  I will resume working with the patches after I give the vitamin d protocol more time.

 

If you have been following my story you know that I had four amazing months after HSCT (https://hsctmexico.com/) where I thought I was going to be the best I had been in years and that all ended beginning in March 2019.  As mentioned above, I had around one fantastic month on Ampyra where it looked like things were on the up and up and then that drug stopped working.  Recently (and mentioned above), I had one beautiful afternoon where I could move freely again thanks to the TaoPatches.  No one knows why things work and then stop.  I do not understand scientifically, but always figured that it is because my multiple sclerosis progression has not stopped.

I have tried other things; some mentioned in previous posts and some not.  Some have helped a little, but nothing earth shattering, which is why they are either not documented or not written about much past the first time I posted about them. I have more things wrong with me physically than listed too, but figured you get the gist.  

Without myelin (https://en.wikipedia.org/wiki/Myelin) repair, it does not appear there is way for me to get better/stop the disability progression.

I hear things like be happy and positive and I am almost all of the time, but I have a huge monkey on my back.  I am living with the reality and proof that I get worse physically every year.  I have to watch myself continue to decline without knowing if it will ever stop and I am 44 years old.  That is not the happiest thing with which to deal. Do not get me wrong.  My life is great and I feel so fortunate, but I would not wish this disease on my worst enemy. It's only for the strongest people and those people still struggle!

 

I am tracking my hair growth until 24 months post HSCT, so here it is in its full glory!

Hair at 19 Months Post HSCT 

Hair at 20 Months Post HSCT

Hair at 21 Months Post HSCT - I straightened my naturally curly hair very poorly 

HSCT Non-Responder Life with Progressive Multiple Sclerosis +16 Months through +18 Months

Multiple Sclerosis Confusion

Multiple Sclerosis (MS) is one of the most confusing diseases for those who do not have it and even for those who do.  For example, I feel great (always have), don't look like I'm sick (never did), and I'm not in any pain.  However, I am quite disabled by MS.

I have a lot of nerve damage from the disease that causes my disabilities.  Each person with MS is unique, a snowflake if you will.  We are all affected by where MS has attacked us.  I have a lot of lesions (nerve damage) on my brain and spine, but mainly have issues with walking and balance.

Some people with only a few lesions are more impaired in more ways than I (including, but sadly not limited to, experiencing debilitating pain, fatigue, brain fog, heat intolerance, and the list goes on).  There are people with MS who compete in all sorts of sports (typically those who are diagnosed with relapsing remitting MS) and there are people who cannot get themselves out of bed (typically people who have a progressive form of MS).  There is not a one-size fits all medication, diet, vitamin etc. regime for people living with MS. That's tough to wrap one's head around.  When a person is classified as relapsing remitting MS, there are more options for them to combat the symptoms of the disease, but with progressive MS there are hardly any and that is not to say one course of the disease is easier than another.  It's all hard.

Try searching for solutions for managing progressive MS online.  It's depressing because there isn't much and I'm being generous by stating that.  The medications have very low efficacy rates and if they do work, all they do is delay the inevitable and typically have pretty terrible side effects.

HSCT is the closest treatment to a cure that MS has ever seen.  However, the treatment is not 100%  effective in halting the disease in it's tracks and has not been FDA approved in the United States to treat MS.  The treatment can reverse symptoms for some people, so there are people who have had HSCT and consider it a cure to MS.  

As you know, I am a non-responder to the treatment and it is up to me to find solutions because when you have MS you must be your own advocate.  The only options my or really any neurologist can recommend are drugs and physical therapy.  I have no desire to take the drugs and my workouts are beyond physical therapy.

How Things Stand Today

The medication I was taking to help me walk, Ampyra/Fampyra, stopped helping a few weeks after I started taking it.  I do not know why, but suspect it is because I continue to decline physically.  In addition, I could not afford it with my insurance even after I finally got Blue Cross Blue Shield of Texas to cover it.  I have almost a year supply of the medication at home from a friend who got the pills for me at a much better rate.  I am still taking it figuring there is no great harm and hopeful maybe it will help again like it did twice in my past.

I can still take some steps unassisted, but if I go anywhere, I have to be in a wheelchair. Mentally, I am totally okay with this.  However, it brings about challenges and means I am no longer independent.  This is a total life change for Steven and me.

On a positive note, I am still working out six days a week and am working full time (at home).  My trainer and my office have been wonderful accommodating me and I have all the equipment I need at home to have a meaningful workout and be productive with work during COVID-19.  This is one of the many reasons why I consider myself one of the luckiest unlucky people around. 

Note:  Hair pictures may be found at the end of this post😏.


Information on the Types of Multiple Sclerosis

The following is information from https://www.multiplesclerosis.com/global/treatment.php describing the different courses of MS.

THE FOUR TYPES OF MS

There are four types of multiple sclerosis (MS), named according to the way the disease acts on the body over time:

• Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 75% to 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. Relapses typically last a few days or weeks. At other times, the symptoms seem to disappear and this is called a remission; however, MS is still active and can progress. Damage to nerves can still occur even though there are no symptoms.2
• Secondary-Progressive MS (SPMS). In SPMS symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Before disease-modifying therapies became available, historical studies indicated that about 50% of people with RRMS progressed to SPMS approximately 10 years after their first diagnosis. Long-term data are not yet available to determine if treatment significantly delays this transition.2
• Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions.2
• Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery2

Hair!!!

Hair at 16 Months Post HSCT 
Note:  I had a hair trim and colored the gray the day after this picture.

Hair at 17 Months Post HSCT

Hair at 17.5 Months Post HSCT Straightened - PONYTAIL!!!

Hair at 18 Months Post HSCT

HSCT Non-Responder Life +13 Months through +15 Months Post HSCT

I may be a non-responder to Autologous Hematopoietic Stem Cell Transplant (HSCT - chemotherapy and stem cell therapy), but my fighting mode against progressive multiple sclerosis (MS) has not waned. I am more passionate than ever about finding a way to get ahead of this chronic disease. 

I am still doing the things mentioned in previous posts. The main thing that has changed for me is using a wheelchair when I need to go distances that I used to be able to walk a year or so ago along with a lot of wall touching and using Steven for security. 

I still LOVE my Segway hover board with a handle (handle sold separately), but I can't take it everywhere. I also found that using one leg (as opposed to both) to pedal my Alinker (walk training tricycle thingy) is doable, so when it gets warmer, I will be taking it out for a spin. I did replace and reposition the seat of this contraption.

I mentioned previously that I am not a big fan of the EDSS Scale (measure MS disability), but to put a number on how much I have declined, I went from a 3.5 - 4.0 in 2018 to a 6.0 - 6.5 today (2020). This scale only goes to 10, which is death due to MS.

Get HSCT Now!!!

Per my previous post, I still totally recommend HSCT. I wish when I first inquired about it in 2012 and again in 2015 (when I had active lesions [NOT a requirement to have HSCT, but better success rates]) that someone would have told me how important is was for me to have this treatment as soon as possible and that if I was continuing to get worse with my walking ability year-after-year, it was very likely continue to get worse year-after-year. Clearly, 2018 was too late for me for HSCT.

Bonus: I have few more months before I may officially declare I am in menopause and thankfully, it's symptomless!

Ampyra/Fampyra

Do not let my determination (or pictures) fool you into thinking things are better than what I am saying. Ampyra/Fampyra is the pretty much the ONLY reason I am still walking. 

During the months of October and November 2019 before I started taking Ampyra/Fampyra, I could barely walk and was coming home every night from work wondering why I was doing this (walking) to myself and being exasperated, frustrated, and upset. I called my number one support HERO, Steven, my husband, from the pharmacy when I got my first month's supply of the generic form of the drug so I would not cry because I didn't think I could make the walk from the front of the store to the back counter where the pharmacy is.  That night I declared I would no longer be running any errands by myself. I am EXTREMELY lucky the drug worked instantly. I'm about 25% better and holding steady at least for now and still run some errands by myself.

Speaking of Ampyra/Fampyra, I have, thus far, been unable to get it covered through Blue Cross Blue Shield of Texas. I paid $595 out of pocket for my first month's supply of the generic form of the drug because I was so desperate for help urgently and I knew from the past this drug works for me (I had a free trial in 2018 and that was my first experience with BCBSTX not covering it for me, so I stopped). I am working with my neurologist to get this drug covered.  In the meantime, a friend got me five boxes (28 day supply per box) from another country. I paid $100 per box of the name brand from outside the country vs the $3,000 per box in the United States.

Emsculpt

I mentioned I was doing Emsculpt (muscle building) back in June/July 2019 to strengthen my muscles and supplement the work I do in the gym every week. After arranging a deal with the owner of the place where I receive Emsculpt treatments, I financed (I am spending more money than I have to be at war with MS) 30 sessions where I choose which body part I would like to build muscle. I am working on five parts (abdominals, hips, and quadriceps mainly and occasionally my hamstrings and glutes). I have to create my own protocol and plan because there are no studies on this treatment and MS. I noticed these treatments are starting to help. A week or so after completing three weekly treatments (recently) on my hips (trying to target multiple hip muscles including the psoas), I started being able to go up the stairs without holding the railing (I do bounce around the narrow stairwell I use for stair climbing like a pinball at times due to balance issues, though.). I have not been able to do that since the beginning of 2019. This treatment is not permanent, unfortunately, so I'm not sure what I will do after the 30 sessions are completed.

Working Out and The MS Gym

Many have urged me to join the The MS Gym, so per my previous post, I did. What I learned is The MS Gym is FABULOUS and if I had not started working out regularly almost six years ago, I would have found it to be the most helpful place for me to be. Luckily, I have been on the right path this whole time, so while I did join, I am continuing on my own with my trainer and the workouts he designs for me. I have NOT reduced the amount of working out I do no matter what is going on with me. Exercise may not have stopped the disability brought on by the disease, but I believe it's helped a ton (along with having a great vitamin regime).

Side Note

The physical rehab I did at Brooks Rehabilitation had some lasting positive effects on my gait, so I may be open to another Brooks Rehabilitation stint in my future. Previously, I said I would not have gone for this type of therapy if I knew I was getting worse, but I really believe in neuroplasticity, so trying again is within the realm of possibility.

Damage Versus Disease Activity and Diet

These are my personal thoughts on MS diets. Diets do not repair permanent damage as far as I have seen and read (I think Keto may claim it does.). Diets are fantastic for people who...

• Have Relapsing Remitting Multiple Sclerosis (RRMS) and want to stop relapsing/disease symptoms
• Are living with progressive MS who have symptoms being caused by inflammation (not trying to correct permanent damage)
• Need to eat much cleaner than they currently do
• Are trying to keep inflammation down in the body in general

Progressive MS is a different story. I along with many others who have a progressive form of this disease who already ate healthy and then tried an MS specific diet for a long time did not receive any benefit in the way of undoing physical damage.

I do consider the gut and what you put in it of the utmost importance when it comes to overall good health, but I have not seen any proof that diets alone undo permanent damage caused by MS.

Hair!!!

Hair at 13 Months Post HSCT

Hair at 14 Months Post HSCT

Hair Combed Out Between 14 and 15 Months Post

Hair at 15 Months Post HSCT