Stem cell transplant

[A7x1823eb]

Hello,

Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement?

Please tell all! Is it a viable treatment option?

[Allder]

Hi, I did a stem cell treatment almost exactly 10yrs ago, but I didn't had cerebral involvement so my input might not be what you looking for.

[A7x1823eb in reply to Allder]

Hey Allder. Thanks for replying. I value your input mate regardless, fire away if you can. Will

[Allder]

Well, I did my stem cell transplant in Sweden, where I live. I was 32 years old when I was diagnosed with AMN, and it was developing in a rapid phase. Under 1 year, I went from running to having a hard time walking without a cane. Since it was so progressive, my doctor suggested that I should do a BMT. I was told that all evidence pointed to that I would end up in a wheelchair within 5 years and that it was over 50% risk it would develop into ALD. I was also told that a BMT would halt everything, but it wouldn't cure the damage I already got on my cells. Also, my MRI showed a small damage on the spinal cord. Today, 10 years later, my MRI scans look the same as back then, and my cortisol levels are good. But the BMT didn't quite stop the progression of the AMN, it sure has made it to progress in a much slower rate but my balans and muscle strength in my legs have got worse, but not much. Still, I only have to use one crutch when I walk. I have other issues related to AMN also of course.

Overall I'm extremely grateful I got the opportunity to do the BMT since I'm absolutely sure it was a huge life changer for me, but every case is different, and it doesn't seem to be a consensus on the treatment among doctors or patients.

[Djp1989 in reply to Allder]

Interesting. I've never heard of anyone with AMN get that. Also, don't know anyone who's symptoms progressed rapidly. How are you managing now? Do you still use a cane? I've had the disease for 10 years and my brain and spine MRI are normal

[Allder in reply to Djp1989]

By rapid I mean my walking abilities. I can see from videos years earlier that I did halt some when walking but I didn't even pay attention to it, neither did my wife. Then the summer of 2013 I got trouble running and 6 months later my balance was extremely poor. The BMT made it slightly worse, but since then it haven't been much of an downfall. I still walk with one cane, but if I'm on an activity with my son I normally use two so I can move faster.

[Djp1989 in reply to Allder]

Very interesting. Thanks for sharing. I am 10 years into having symptoms and knowing I had this disease. I use 1 walking stick normally and 2 if I am going to be walking a lot.