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