6 month update

Six month post-transplant update: Filled with Optimism

6 months ago I underwent a stem cell transplant with the hope of stopping further progression of my MS.  Last week I was in Seattle for appts and I’m very encouraged with how things are going. 

Things are happening!  Slight progress tells me that I’m not what they would call a “non-responder”, meaning the transplant was a success. My neurologist appt showed I am back to baseline with my walking. Baseline- meaning pre-transplant. 

There are two parts to recovering. First is recovering from the chemo and transplant. My hematologist is happy with my numbers and I was able to start getting my childhood vaccines, all of which were wiped out from the transplant process. 

The second part is to work on my MS symptoms. Many have improved since the transplant. Heat-tolerance, fatigue, brain-fog, bladder issues, numbness, the list goes on…..all showing improvement. 

The main issue now is how to deal with prior damage to my nervous system due to MS. I’m doing a lot of work in the area of neuroplasticity and a lot of PT work.  After trying several types of PT I’ve found the best support has been an online program called MS Gym. I work on these drills and workouts daily.  Jeff and I were golfing yesterday - yes, I’m back to playing golf- and we were talking about how we don’t know what the key to success really is. It’s such a new treatment for MS and there is no rehab protocol to follow afterward.  I honestly don’t know if I would have seen this improvement if I did nothing at all post-transplant or if this recovery can all be attributed to neuro drills and rehab. Who knows?  But we decided whatever the reason, something is working. Very slowly, but it is working. 

I know people see me out walking and don’t see much change. Some are afraid to ask how I’m doing. I still look like I walk funny and my balance is wonky. I know, it’s weird. It’s wild!  This whole thing is nutty- but please feel free to ask how I’m doing. I’m more than happy to share! 

I do still have trouble with long walks so I bought a walker that can also be used like a wheelchair. It’s been so great. We went to our first Mariners game in two years. We walked up and down Alki Beach and also rented two-seated bikes. It’s so nice to be active again.  

So, we are excited. I’m so happy I did this HSCT transplant. There are still NO cures for MS. Anyone that tells you to just “change your diet” simply does not understand PPMS. My neurologist and I both feel like this has given me time as we wait for either 1) a cure for MS or 2) an FDA approved treatment for remylenation. Without either of those, we just wait and see how much I can improve and how long improvements will last. 

Speaking of remylenation, there are some promising studies in this area.  I’m hopeful that is then next wave of “MS treatment” coming our way. Because the only treatment currently approved did not work for me- and it didn’t work for many others with PPMS (and if you want to know my opinion- it made many of us more disabled quicker). 

I’ll keep updating as we continue on this wild ride….

Xoxo, Bridget