Verfasst von: melscholz | 22. November 2013

Baby steps

18 months ago today I received my stem cells back, my Day 0.

Before HSCT, I had had MS for 15 years, was secondary progressive and an EDSS of approx. 5.5.

Today I would say that my EDSS has neither significantly improved or  worsened, based especially on my walking, balance and mobility.

After initial improvements in the first 2-3 months, some things started to decline again.

As of now, I am convinced that the MS has been stopped and any decline is attributable not to inflammatory activity but to the permanent damage and extensive sections of nerves that are completely lacking the myelin sheath andprobably continue to degenerate. I think of my „naked nerves“ as metal wires in the rain that continue to rust.

I have been off all medication and have not seen a neuro (no need to!) since three months post-HSCT. In December I am planning to have an MRI as a „check-up.“

Some days are better than others. But as much as I’d like to know why, I can’t make rhyme or reason of it – it’s just the way it is.

A good three months ago , at physical therapy, I started a regimen of using weight training machines twice a week. Last week I was retested and the results were surprising to me – although I don’t subjectively feel stronger, objectively, all of the machines showed an increase in my strength!

 My weak bladder has also become stronger. When „out and about“ I still have „urge issues“ and sometimes can’t get to the toilet fast enough. However, at night time, instead of having to get up several times a night, I usually only have to get up once now, and sometimes not at all.

I also notice cognitive improvements- my memory is better and I think faster.

I am much more at peace with myself and accepting of the disabilities I have.

My immune system was definitely „reset“ – I’ve had 5 or 6 colds in the last 18 months, which is a lot more than previously. Having a cold always throws me back and it takes time and work to get back to where I was before getting sick.

It has been a long road post-HSCT, with ups and downs. The improvements that I have sensed in the last few weeks, make me realize again, that time is working for me. Baby steps. And I especially want to give encouragement to those who have HSCT in the last 18 months to remain patient and positive.

turkey time

Advertisements

Responses

  1. It’s always great to hear an update, Melissa. And I think it’s so important that you get your information out there, so MS folks with various forms of treatment can compare notes. take care.

    • Thanks, Andy. There’s lots of progress being made and many people have experienced more marked improvements post HSCT than I have.


Kommentar verfassen

Trage deine Daten unten ein oder klicke ein Icon um dich einzuloggen:

WordPress.com-Logo

Du kommentierst mit Deinem WordPress.com-Konto. Abmelden / Ändern )

Twitter-Bild

Du kommentierst mit Deinem Twitter-Konto. Abmelden / Ändern )

Facebook-Foto

Du kommentierst mit Deinem Facebook-Konto. Abmelden / Ändern )

Google+ Foto

Du kommentierst mit Deinem Google+-Konto. Abmelden / Ändern )

Verbinde mit %s

Kategorien

%d Bloggern gefällt das: