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.

[Aaron98 in reply to Allder]

Here in the States, they won't even consider a BMT unless a man is developing cerebral disease. Even then, there is a relatively narrow window for that sort of treatment. I'm amazed that you got this done with "pure" AMN.

[Allder in reply to Aaron98]

Seams like they have totally different science reports. The reason I got to do a BMT was because I wasn't developing cerebral. I'm told by my doctor that a BMT can't stop cerebral development once it started. That's why it was critical that I did it fast before it started. I'm not saying that my doctor is right or wrong, just what I'm told by him here in Sweden.

[TravisWharam]

I have inquired about iv stem cells. Depends on the cost since insurance won’t pay for it.

[brittanyspaniel]

I did some research on the topic. Many US men underwent stem cell transplants (sometimes in Mexico, Panama, or other offshore clinic) that did not result in any improvement, and even resulted in some nasty adverse effects.

That said, there is evidence that it can help function temporarily. The cells have to be high-quality, "clean" both in the reactor, during transport and handling, and during delivery to the patient's body. Repeated infusions are needed to maintain improvement. There is a rigorous study from Poland when they injected a dozen AMN men with neural stem cells intrathecally (in the spine), resulting in a boost in energy and mobility, as measured on a number of standard tests.

Some are proposing IV delivery (which is a lot more palatable than intrathecal), although outcome is uncertain with that, depending on how well / widely they engraft, and start driving their regenerative effect.

[Djp1989 in reply to brittanyspaniel]

Yea I remember reading of a young man in his 30's who died from complications. He had the transplant done in Mexico. 😔

[Djp1989 in reply to brittanyspaniel]

Yes, I read that study also. I wonder if anyone else will do a study for mesenchymal stem cells in AMN.