Verfasst von: melscholz | 25. September 2013

16 Months post HSCT

It was just over one year and four months ago that I had non-myeloablative HSCT in Israel.

Time for an update.

After initial improvement in the first few months, my walking, balance, strength and coordination in my legs has deteriorated and is about the same or a little worse than it was before HSCT. Good old „Johnnie Walker“ or a Nordic walking pole accompany me on just about all of my outings.

The heat bothered me very much this summer, making me weak, tired and uncoordinated – more than I remember in the past years.

Other things have improved-

I seem to be able to think faster and remember things better.

My finger coordination is better – I can still type on the keyboard until my fingers just won’t cooperate anymore but it takes longer than it used to.

This summer I bought myself a fun, used piano, after realizing that trying to play the flute again (I had stopped years ago) was ending in major frustration and a stiff neck. While I’ll never be a concert pianist (nor am I aiming to), it has been so much fun to plunk out old favorites and to see that with practice, I am actually getting better. Two or three years ago, I had thought about buying us a piano but decided it would end up being a frustrating reminder of what I can’t do.

The third major thing that improved after months is my bladder – I often am able to sleep through the night now without getting up. And often I’ll pause at my favorite „pit stops“, only to decide „not now, I’ll go later.“

Summarizing, I am on no medication anymore, some things have improved, my mobility has gotten worse. I go to physical therapy twice a week. The extreme fatigue post HSCT has let up but I know that I do better when I take a 1-2 hour nap during the day -although life doesn’t always make room for that luxury.

The emotional side of it is tough at times – it can be frustrating and disappointing not to have the strength and endurance I would like to. But when I fall down, which I literally do sometimes, I stand up, shake myself and get on with it the best I can.

While I had been hoping for greater improvements, I’m happy to have done HSCT, and would do it again. The healing of the myelin sheath takes time and there is permanent damage to the nerve cells themselves. We are all collecting information and gaining experience as HSCT for MS becomes more established. When I joined the Facebook forum a couple months before I had HSCT, there were 10-20 members, now there are over 1000. In the forum, we are seeing that those who have aggressive relapsing remitting MS experience the greatest improvements. With secondary progressive MS, progression is stopped in most cases and recovery seems to be slower. Patience is key. Patience is key. Patience is key. Patience is key. Patience is key. 🙂

 schroeder

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Responses

  1. Kämpf dich durch. Love you ❤


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