Update to my previous post "Brain Inflammation". I went to my last MIN-102 follow up and had an extended visit for a battery of tests and to view my MRI (just a year later from previous) and ask questions. The study neurologist will be the consulting physician going forward and the MRI was reviewed by Dr. Keith Van Haren, a researcher and physician, who treats children with ALD at the Lucile Packard Children’s Hospital Stanford which is designated as a candidate Leukodystrophy Care Network (LCN) Center. (LCN Centers are recognized as national leaders in the treatment and management of leukodystrophies.) My Lowes score is 8 which is early stage but I believe 9 may be considered late stage (and 13 is advanced stage) which is why they want to start BMT ASAP which would halt the progression as it may be too late to begin treatment when symptoms begin to show which is why, gents, be sure to receive your yearly MRI.
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SongStream
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Really sorry to hear this but glad you’ve got it early! I want to wish you all the very best with the BMT! The doctors are getting good now and there’s been more adults doing them recently also the guy on here from Sweden
It's like serendipity because I had thought the older you get, the less risk. (This is not necessarily correct) and I probably might not had taken an MRI if not for the study.
Sorry also to hear this news. But you are a strong person, both physically and emotionally, so you are in a good place to deal with this. It won't be easy but you'll come through.
As Steven says, more adult men doing this so there is much more understanding than a few years ago.
Thanks Chris! At first, it was going through the quick stages of grief, but I accept and I own it! This gives me a second lease on life and I'm so inspired. (For some this may sound pollyanish, but we know better).
I'm 55. I am like you I thought at this age we were safe from going cerebral. Best wishes with everything and the whole process. Maybe I should get an MRI. Its been more then 5 years I think.
Not the best news for you - sorry to hear it - but Loes score 8 is good at this stage. Your cognition is not impaired one bit, which is even better. As you say, the MIN-102 study has meant it is caught early. You have met good doctors already, and at an early stage - the best. We'll be thinking of you here.
Just been updating my understanding of the current state of BMT. There's a lot out there, all of which provides input for you in terms of questions to ask your medical team.
It's made me wonder what - if anything - our AMN Easier network can do to help you as you approach BMT? That may be something practical that we - as a network for adult AMNERS - could do.
I'll be happy if you say "nothing for now", but you may want to consider.
Any list of questions/tips could also form a useful resource for future BMT candidates.
The community alone has been so supportive! I was thinking about your kind gesture and it got me mulling and I came up with mentorship with another AMN(er) who went through the same procedure. Online, it is most common with blood cancers and such. Anyways, I like the idea of peer mentorship especially, too, for the newly diagnosed. Right now, cerebral AMN is an amazing and uneasy head trip.
Sir, I remember you from the brunch after the blood drawn in Keith's research lab for the Vitamin D study. Fellowship in person was so important and meaningful.
Nice of you to ask. I'm not having any cognitive symptoms nor any mood symptoms relative to ACALD. As for BMT treatment, it might be at Kaiser, tho', I'm still pending approval. However, my neuro was in a Zoom call with Dr. Sampson and Keith to give her an understanding of brain lesions and their experience giving patients BMT for treatment. Keith had also recommended referral to Kaiser's BMT as they might be able to perform the procedure here or they may defer to Dr.Lund. I've read up on Bluebird Bio trials and it's unfortunate my age disqualifies me.
I just had a call from my neurologist and my brain lesion is getting bigger? There’s no gadolinium showing though which is good? They don’t know much about ALD and is arranging another scan for March and spoke about a BMT?
SongStream - just catching up on here...sorry to hear the news. It’s something that’s constantly in the back of all of our minds. I, like you, probably wouldn’t get my annual MRI if I wasn’t in the trial so I’m glad you were able to catch it early. You’re an inspiration with your attitude! Stay strong - we’re all with you and praying for you brother.
Thank you for the update, Steve. It was nice speaking with you on the phone a couple weeks ago.
I'm wondering, would you mind sharing with us what goes into the BMT? Like, what is the initial procedure like, and what is the long term care after this procedure? If this is too much for you, please don't worry, but I just think there are probably many of us who want to know what the procedure is like these days. I'm unfortunately pretty unknowledgeable about it. Do you need a donor?
Finally, I'll second Chris. What else can we do to support you?
At this stage, I'm pending approval from the hospital board but I have done some reading. I believe that our diseased cells need to be killed by chemo and perhaps radiation, too. Takes 2-3 hours for the stem cell IV (HSCT) treatment and up to 90 days of recovery while the immune system is built. There is a registry to find compatible donors (if no sibling match) and includes umbilical blood cords. I really have no idea until I'm underway. There is a risk and that concerns me. Please know that all of you have been so supportive and you lift my spirits. This is a crazy time with the pandemic and now this.
Thanks for sharing, brother. I shed tears tonight reading this. Are they doing a donor search right now? We are with you, we care about you, and we want to hear how you are doing through all of this.
Just got the email from my neuro saying that my BMT was approved!
However, still not sure what next steps are - who will be contacting U of Minn and coordinating, etc. So she sent out an email to the BMT advisory board chair as well as Drs. Van Haren and Sampson.
Update: Just found out that U of Minn was sent an email to see if they can take me!
I know Dr. Troy Lund personally and he is one of the best in his field. I hope you are able to have him do your BMT and if not at least have him mentor your Kaiser physicians so that they know the protocol for AMN patients. I admire your courage and your optimism. I will anxiously await news of your progress.
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