Just to remind you, I was SPMS with an EDSS of 4 – 4,5 before the HSCT procedure. My disability was fully limited to the right side of my body: Leg, arm and mild optic neuritis. On top, the usual MS stuff like fatigue, MS hug, urgency, vertigo, occasional depression and moodiness.
I have, and always had, an A type behavior personality, meaning I expect things to have happened yesterday. This probably played a role in my HSCT happening 5 months after I first learnt of the great results obtained in clinical trials. The downside is that I can get impatient and forget that there are things in life (more than I care to admit) that are beyond my control. The recovery from HSCT is one of them.
So here’s where I stand 2 months post chemo and transplantation, and remember, I promised nothing but the facts: Things are getting better, inch-by-inch, step-by-step, though hardly as fast as I would like them to.
My blood counts have fully recovered, apart for my white blood cells. These (B and T cells) will fully recover after 12 months. This is when I will be vaccinated to enable my now naïve and deficient immune system to effectively protect me from Chickenpox, Polio and the likes.
With the recovery of my blood counts, I experience my stamina and vitality are getting close to what I would consider normal. I no longer feel the urge to take a nap during daytime. I do feel a little tired after a sustained effort like exercise, but the MS hug and fatigue are all but gone. Bottom line, I experience like I have been pulled out of a long period of hibernation.
Vertigo is all but gone and I am stable. Before HSCT all you needed to do to have me fall over was to sneeze. Now you can push me and I will remain stable on my feet.
Urgency is gone too. No waking up at night, and I no longer need to fear I will not make it on time to avoid being embarrassed.
Optic Neuritis also seems to have resolved already in this early stage. In the past 2 months I only had one very subtle reminder of what was a permanent nuisance before HSCT.
Brain lesions; I have scheduled an MRI sometime in September and agreed with my Neuro (whose spouse happens to be a hematologist) that we will run an MRI twice a year to monitor whether the disease progression actually topped.
Finally, you probably want to hear whether my walking has improved. Well, unfortunately I’ll have to disappoint you here. This is where my patients’ will be put to the test. Whether my motor functions will improve, and to what extent, is unlikely to become apparent before sometime in 2012. Damaged Neurons take time to recover, and in some cases, some may even be beyond repair. For the time being I am struggling to recover the muscle mass I have lost due to 5 weeks of practically no exercise.
Finally, the worst part of MS is that we people are designed to hope and believe that tomorrow will be better than today. SPMS meant that tomorrow would inevitably be worse than today. After HSCT I have literally come back to life. I dare to dream of a future (despite the looming double dip recession).