Don't Laugh. It's Not Funny. It's My Life.

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 ...

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 bet...

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...

This was the second quarter of my recovery form the  Hematopoietic stem cell trans plantation (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 w alk 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 ...

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 wi...

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 ...