Verfasst von: melscholz | 4. Mai 2016

Hard to believe…

4 years have already passed since my stem cell transplant for (against) MS in Tel Aviv.

Since people still wonder and ask how I’m doing, here’s a brief answer “on paper”.

It hasn’t been the resounding success (a reversal of symptoms due to remyelination – maybe even the joy of skiing again!) that I had hoped for. BUT I haven’t had a flare up/relapse, either. The physical degeneration because of the damage to the nerves before HSCT continues to progress slowly.

Which is too bad and I have had to (was able to?) learn a lot about dealing with dealing disappointment. But, life being life, there are many positives that I hadn’t expected, too. I have a wonderful partner by my side now, who doesn’t care one iota whether I’m standing up or sitting down or if my legs wobble or not and we have so much fun and do so many great things together. The support from my kids, acceptance and understanding from family, friends acquaintances and strangers is great and has restored my faith in humanity (which I had never really lost to begin with, but you know what I mean.) A new neurologist has new ideas and is helping me to manage my symptoms better. My little business, FehlerEngel, translating from German into English is busy, fun and good for my sense of self-worth.

Would I do it again? Yes. So many good things have developed since then, even if I didn’t get the result I had been hoping for. And I couldn’t have NOT taken the chance that it might have worked the way I hoped.

My tips and thoughts for people who are considering HSCT for MS:

The earlier, the better.

That way you can keep irreversible damage to a minimum and increase the chances of your body achieving a certain degree of remyelination on its own. However, because of the chemo, HSCT is not to be taken lightly. Meaning that a person who has mild, slowly progressing MS that responds well to the standard disease modifying drugs available today may be better off taking that route, in my opinion.  Someone who has aggressive, rapidly progressing MS ought to look into and consider HSCT parallel to trying to stop or slow progression with DMDs, making it easier to make an informed decision without losing a lot of time if the DMDs don’t help.

It’s been 4 years, many neurologists are better informed than they were about HSCT, however many are still sceptical and hesitant, which is ok. The University Klinik in Hamburg-Eppendorf and the University Klinik in Heidelberg are the only two clinics that conduct HSCT for MS in Germany that I am aware of and can examine, inform and advise in a personal appointment about whether HSCT is a suitable option.

The chances of HSCT for MS being covered by German state health insurance are better than they used to be. So don’t let the expense keep you from considering HSCT if you have German insurance.

I’m no expert and no doctor – just a patient with MS who has had non-myeloablative HSCT. You’re welcome to contact me if you have questions or are looking for information. I’ll do my best to help.

I figure this will be my last blog entry and want to say thanks to you out there in cyber-world for your support. Hopefully, I have been able to help others in return. 🙂


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