Kickin' MS with HSCT

November 19, 2013

How time flies.  I can’t believe it’s been 2.5 months since I received my stem cell transplant in Moscow.  I was just looking back on the post, and remember how nervous I was at the time.  I knew this could be one of the parts of the treatment that could be a bit painful, and it was.  It lasted such a short time, it’s a distant memory now.  Looking back I know it all was worth it.

At this point everyone wants to know if the treatment was successful.  For HSCT to be considered successful it must stop the progression of the disease.  No one promises you that any symptoms will go away, or any damage reversed.  We all hope for that, but it’s not what is considered a “successful” outcome, it’s a BONUS!  For me, with PPMS, it might be a year before I can say the disease has not progressed, so it’s a waiting game.  When you first come home from the treatment I call that the “Honeymoon” period, you are still pumped up on steroids and your symptoms are masked.  So, you think your symptoms have disappeared, but they are just hiding, they sneak back up, maybe not a strong as before, but they come back.  I am now on the recovery roller coaster.  My systems may come and go over the next 12-24 months.  So, the final outcome remains to be seen.

What can I tell you 2.5 months post transplant?  (I’m going to use the format that Kristy used, she went through the treatment with me, so we have some uniformity.  And I thought she did a great job explaining her progress).

MS SIDE EFFECTS THAT HAVE DISAPPEARED SINCE TRANPLANT:

None – NOTE: I have PPMS, not RRMS, so how MS effects me is different than Kristy

OLD SYMPTOMS AND HOW THEY ARE NOW:

Fatigue – Much better.  I need a nap during the middle of the day to recharge, but I really think this is from the chemo.

Leg weakness – I am weak from being in the hospital for 5.5 weeks, and am getting stronger every day.  I do exercises from PT and walk daily.

Heavy Legs – This really does seem so much better.  I would almost say it’s gone, but let’s wait and see.

Bladder urgency – Much better, almost normal. 🙂

Leg Spasticity – I still suffer from this, mostly at night.  It’s not as bad as before, but I have had a few nights it was very painful.  Usually if I take a Magnesium supplement in the early evening, and then again before bed, it’s under control.  This had completely disappeared while I was in the hospital thanks to the steroids, but re-appeared as those wore off.

Toe drop – It’s still there in my right foot, but it does seem to be improving as I gain strength.

NEW TEMPORARY SYMPTOMS THAT CAN BE ATTRIBUTED TO CHEMO AND STEM CELL MOBILISATION:

• Hair loss
• Bone and joint pain
• Fatigue
• Hot flashes (hormonal imbalance from the chemo)
• Muscle weakness (from long hospital stay)

The symptoms that bother the most are the bone/joint pain.  I have it all over, but I notice it mostly in my legs, (knees, hips and ankles).  It really is painful when I’ve been sitting or laying down for any period of time.  It aches to get up and get moving again.  So, just turning over in bed, or getting up from a chair is very painful right now.  I’ve heard this can last from 3-6 months, hopefully the lessor of those. 🙂

My gait seems to be improving, this is because the toe drop is not as bad.  I still walk funny and use my trekking pole, but I can see not needing it in the near future.  Most of my unsteadiness now, I feel, is from my muscles still being weak from the hospital stay.  So, with continued strength training this should improve as well.

What can I do now that I was not able to do before HSCT???  I walked 1 mile over the weekend!! And the last part was up a big ass hill.  I’ve not been able to do that in a couple of years, so a really big deal.  It did take me a day to recover, but so worth it. I was at PT yesterday and told him of my progress, I’m rocking PT BTW, he said that was great, but to hold steady at 1 mile for now.  So, slow and steady…   Oh, well, I’m still hoping for more progress in the future, and I won’t give up.

First time Thomas and I went out to eat.

Yep, still bald.

Hair is sprouting!

I want to thank everyone who has been there supporting me through this journey. Your prayers, positive thoughts, phone calls, messages and financial support has made this possible for me. THANK YOU ALL!!
VW