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.