AMN EASIER
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Transplant Viability

I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a major affect on my life I was an extremely active person and I have done everything I can to keep as much of my mobility as possible. Quickly after my diagnosis my geneticist suggested a bone marrow transplant to protect brain function. My MRI's have shown a small amount of damage but from the doctors explanation the contrast isn't "lighting up". I've talked with the transplant team and I trust they would do everything to ensure success but I haven't been able to find any reading material about adult transplants. What is the probability that this procedure would be beneficial for me?

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They are doing them in Germany with mixed results. There is a paper out and I just cannot find it at the moment to send.

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The paper I have relates to adult cerebral ALD HSCT's

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Hi Bob,

I'd be very interested to see the paper? I have a brain lesion

Thanks

Steve

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Did I send it Steve

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I didn't get anything? Thanks bob

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I'm afraid you also need to consider not just the benefits, but the risks associated with BMT. The main issue for adult males is the body's propensity to reject the transplant, and the need to take immune-suppressant drugs for life after transplant. Up to now, the outcomes have not been good, and I have yet to read any information to suggest otherwise. This is not the case for young boys where BMT has a much higher chance of success.

However, if your medical team are suggesting BMT, then this may be the best option. You need to ask about the prognosis if you don't go ahead with BMT. Sounds like you have a good medical team helping you. You are young. If it were me I would seriously consider it if the longer-term prognosis was not good.

Where in Canada are you? I lived there many years ago.

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Wasn't there the guy in Sweden who had the proactive BMT. I don't know how he is doing now though.

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Hi,

That's me you referring to :)

I did my BMT in August 2013 when I was 32 years old and my AMN is not progressive anymore. I did it before any signs on the MRI scan and still not so im OK. Of course there is a risk but my AMN was so progressive I would for sure had been in a wheelchair within 5yrs and probably develop ALD, that's what the doctors told me so it was a simple choice for me. It was harder then I thought and some complications down the road, if any one want more info just send me a message.

Regards,

Max

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Max, that's amazing! I have so many questions for you, but I will try to limit myself to just a few.

Did you have this done in Sweden? How did you convince the doctors that this was a good option, if you were not developing signs of cerebral disease?

Have you really not progressed at all, AMN-wise, since the BMT? No worsening spasticity, pain, mobility, etc.? What is your condition like now? Thank you!

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First I must correct myself first, I did my BMT in august 2014, not 2013.

Yes it was in Sweden here where I live it was done.

When I was diagnosed with AMN I got the alternative directly from my doctor to make an BMT, so I didn’t need to convince them at all.

My symptoms are bigger today then before the BMT, but I’m getting better all the time. But that’s what happens after a BMT, specially mine because I had some complications so my rehab is taking longer. But since I only getting better and don’t show any signs that the AMN should be progressive it’s quite clear it worked for my. I do understand I can’t get any better than I was before the BMT but shouldn’t get any wore either.

It took me about a year before I started working 100% again and I use a cane for my poor balance. What is quite interesting is that before the BMT i took cortisone because i had like Addison, but made a new test on my kidney 6 months ago and it showed so much improvement of produce cortisone it self, so i no longer need to take medications for that.

Feel free to shoot more questions if you have!

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Hey Max..

You're a bit of an anomaly in the group. Most of us haven't looked at a BMT as a 'preventive' thing.. You still running and rolling like you were as a kid? Zero symptoms of the disease?

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Hey Jason...

You got all clear, i feel 30 years younger today and they also gave me a trillion for doing a bmt.

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For the record, I believe that doctors are not convinced that a BMT stops or prevents AMN.

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who cares if doctors are convinced, Max is walking (pun intended) proof that it works. Sure, there are cases where it doesn't work but doctors don't live with it every hour of every day...right?

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other than nagging pain, what other symptoms are you having? How old are you now?

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At this point the team has left it open for me to decide if I want to go forward or not. I'm 25 and living in Alberta. Over the past four years my symptoms went from what seemed like a loss of balance, to a lack of sensation in my legs, to a constant tension that creates some difficulty walking and I am unable to run. I've started taking baclofen to try and ease my muscles and am having some results. Spasticity recommended legs braces which have allowed to get back to a swift and steady walking pace instead of being all over the place. I also changed from being a recreational cannabis user to being a licensed medical patient and have started making my own infused oils and salves that have helped take the edge off of the pain and make it manageable.

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Hello,

I am also in Alberta, about 45 minutes South East of Edmonton. I am sorry to hear you are having so much trouble so young!!

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I could absolutely be mistaken, but from everything that I have read, BMT at this point will not be considered for a male who is only diagnosed with "pure" AMN, even with some lesions. If one is showing signs of developing adult cerebral ALD, that is when it is typically considered. Is your medical team telling you otherwise, Laird Mac? How have your MRIs looked? Have you sent copies of the images to ALD/AMN specialists? I'd highly recommend it.

As an aside, I saw a new neuro-rehab doctor yesterday, who is recommending that I try leg braces. What do you think of them, and how often do you wear them?

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I think Aaron is correct. The issue is to decide if you have AMN or an early stage of the cerebral ALD diagnosis. If it's AMN, then it wouldn't be wise in my opinion to go with a BMT option. I would suggest you press your medical team for clarity on this issue. With AMN, Your walking will still get worse as it does for all of us, but that is the way it is with AMN.

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I am the first case of the disease that any of the healthcare professionals helping me have seen. I only saw my first MRI personally and there was just one tiny area that was irregular, I was told that there was no change with my second. I have been suggested or have looked for ALD/AMN specialists, the closest specialist I have seen is a geneticist who I am sure has been talking to others more specialized.

The braces work wonders. About this time last year was when my ability to walk was starting to be impaired, although my running had already been affected. I was noticing my feet dragged while walking and sometimes tripping me up. After I got the braces I had a holiday in Portugal, while I didn't get out as much as I would have liked, I was still able to walk the cobblestone streets and walkways without issue. If I'm going out or needing to do some work outdoors I'll put them on for the full day. The ankle of mine articulate with a plastic hinge that pulls my toes up and restricts extension to 90°.

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Thanks for sharing about the braces, Laird Mac. Do you know the name of the brand that you wear? I met with an orthopedic team yesterday to try some on, but they weren't very comfortable. I'll probably shop around.

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imgur.com/a/C1zUbdE

They were custom made by an orthotist, thankfully they were fully covered by my provincial healthcare and income support.

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Thanks for your reply. Those look way cool. I'm glad you got coverage for them.

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Aaron is right, to get the best advice, you need to talk to the docs and researchers that study this stuff. From what you’ve said, you have a very caring medical team looking after you, but they do not have the expertise you need.

You can still walk?! You’re way ahead of many of us on this form. Keep pushing forward and fight through the pain.

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Hi Laird_Mac,

I check with ALD Life here in the U.K, and it seems we have one adult male who has had BMT with so far good results. We also know of three others but are not sure of whether these outcomes are good.

I will message you privately (look for an alert on Chat) with the email address of Karen Harrison who is Support Services Manager for ALD Life. She can put you in touch with the chap I mentioned and probably with a medical contact as well. This would allow your medics to liaise with them as well.

Chris

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Hi Laird Mac

Did you get my private message and did you get in contact with ALD Life as suggested?

There was a discussion about adult BMT at the AMN/ALD patient conference two weekends ago here in London. I think there are better results emerging for BMT so the outlook is positive. I can't recall if there was any discussion about whether it would be prescribed for BM if cerebral ALD had not yet been detected. Maybe someone else who was at the conference can add something else? Monmon?

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I did get your message and contacted ALD Life. My last email to them was on May 2nd and I haven't received a second response yet.

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OK, I will double check with them. I know they were busy catching up with things after our recent weekend conference in Lonon. I will let you know....

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That is very interesting information, Chris, and I would be interested to find out more. Would a BMT donor need to be a close relative, like a brother without the gene mutation?

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