Verfasst von: melscholz | 3. Januar 2015

A New Year’s Update

It’s been a long time since I have posted here. Some people have asked how I’m doing and suggested I add an update.
I’ve been slow to do that, mainly due to the fact that there hasn’t been much positive to report on and I don’t like sounding negative or want to potentially discourage someone with MS who is thinking about HSCT.
However, the experiences, information and decisions of the last couple of weeks have prompted me to write this.
Summing up:
I had non-myelo HSCT at CTCI in Tel Aviv, Israel in May 2012. My experience was very positive and I „breezed“ through treatment without complications and was on my way home after five and a half weeks. Minus my hair, of course, but with a lot of hope for what the future would now bring. (It did bring a wonderful partner but that’s another story.)
–My MS was diagnosed 1998, RRMS, last flare in 2008, so most probably I was SPMS by the time I had HSCT. EDSS at time of HSCT around 5-5.5, now 6.5-7)–
After HSCT, I experienced a brief improvement of approximately 6 months, then decline began to set again, although an MRI showed no activity.
In February 2013, I had MSC treatment at a clinic in Switzerland, which cooperates with CTCI/Professor Slavin. (Again only positive experiences here.) After this, I also experienced a brief improvement of 3-4 months before starting to decline again.
During the rest of 2013 and 2014, I went on with my life (which I love!), adjusting to my incapacities as needed – I bought a wheelchair, a second walker, learned to always ask someone to run errands for me and do the grocery shopping with me, had landscaping done to turn the outdoor steps into a ramp. And so on.
Through my blog, I was able to help a couple people with MS in Germany receive HSCT and thanks to the recommendation of one of them, I went to see a different neurologist.
And now, finally getting to the meat of this story…
My new neurologist, with whom I met for the first time in December, supports and is positive about HSCT for RRMS but does not feel that it „works“ for SPMS. In his opinion, when MS reaches the SP stage, the actual autoimmune inflammatory activity has (almost/practically) ceased and what remains is chronic inflammation. HSCT reboots the immune system and serves to stop autoimmune activity, however, if there no longer is autoimmune activity, then it will not help. My having done HSCT definitely stopped whatever underlying activity may have been there and the brief improvement experienced was probably due to the steroids I received during treatment. He is positive about MSCs (population expanded), feels the science of them is promising but that it is still too early.
So what now? I have begun taking Ampyra again and feel a slight improvement in speed and confidence when I move. But the main thing is that in January I will receive steroids intrathecally – Volon-A is what the drug is called here in Germany. This will target the chronic inflammation and hopefully bring some improvement. This is not a „solution“ or a cure but it can be repeated as necessary -probably every 3-6 months.
As you can imagine, it’s not nice not being one of the HSCT success stories. My hopes were high and the past two years have been a (hard) lesson in dealing with disappointment. While still positive about HSCT in general, I now would support having it for RRMS and caution those with SPMS to try to reign in their high hopes, as they may well not achieve the results they would like.
There are, of course, varying opinions about this -I don’t claim to be right, just wanted to provide additional information about my experiences. Let me know what questions you may have – I’ll do my best to answer!
I will post an update in a few weeks as to how it goes with the Volon-A.
Happy New Year to all and I wish you the best of luck in fighting off or at least curtailing MS!

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