Bone Marrow Transplant.

[Seifert_09]

Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston to have this done. Which is 2000 miles away from home base Albuquerque New Mexico. I have 3 children a 10 year old son, a 7 year old son, and a 5 year old daughter. Being away from them for three months is a tough pill to swallow! Any info/guidance is always appreciated!

[JasonHarnum]

how are you doing? a BMT is serious shit, lots of complications can come up. What did your Docs say?

[Seifert_09 in reply to JasonHarnum]

I think I’m doing ok. I have high hopes because I’m working directly with Dr Eichler who is actively working on ALD and AMN. I just went through a divorce and now I have pretty good chunk of depression. Mentally I’m at the the point I’m throwing darts at what ever might help! Dr Eichler and hiss staff are great so I feel like I’m in good hands. Plus I can say I spent 3 months at Harvard helping others learn!

[monkeybus]

Hello, comrade.

I've been following your posts for ages now. What's going on? Is this a cerebral thing, or is it to have a shot at curing your other symptoms?

When I had my brain lesion scare last year, I hunted for a donor. All my friends offered, as did a lot of my trade union.

Tissue typing is a nightmare.

Can you update us all as and when? I'll see if I can dig out my donor bank info for you. I'll try today or tomorrow.

Later.

[Seifert_09 in reply to monkeybus]

Thank you good sir!

[Seifert_09 in reply to monkeybus]

Our goal is to stop the lesions from progressing and freeze these suckers!

[angelicahca_]

Are you an AMNer? Has any one of you ever been submited to a bone marrow transplant? There are studies that prove bone marrow transplants are only indicated to some ALD cases.

[KennyInPA]

I'm meeting with a company interested in gene therapy in December to discuss my symptoms and every day struggles with AMN. (Not necessarily pursuing anything, but just being a talking head for AMN to help others understand!) I think the two might be related. Definitely keep us posted!

[quilling]

Know the struggles of being away from home and children. Not as a patient but as a mom of son. Back in 1991. Didn’t know AMN was candidate for BMT. I am a patient of Eichler as is my son. Finding out BMT for ALD isn’t preventing AMN so happy that now they must have new info to be doing AMN Will follow and 🙏🏻

[Seifert_09 in reply to quilling]

Dr Eichler is such a wonderful man. His level of concern and research is quite helpful. Much more than my current Doctors! I will keep the group informed on my journey and the out come! Thank you for your reply!

[Allder]

Hi Seifert

I did a bmt in August 2014 and doing fine today. I didn't get better from my symptoms, I did know that before of course but it did succeed to halt the AMN so it's not progressive any longer.

See my thread about it, might not give you the answers you looking for but don't hesitate to ask if you wonder some.

Wish I could be more active here but will try to answer any questions when I can

healthunlocked.com/amneasie...

Regards,

Max

[KennyInPA in reply to Allder]

Thanks for the update Allder, I recall reading your post and when this came up wondered how you were doing. Glad to hear all is still fine years later!

[Seifert_09 in reply to Allder]

Thank You very much !

[pgh_ in reply to Allder]

Hi Allder, did you have brain progression before BMT?

[Allder in reply to pgh_]

Hi, no i didn't have any brain progression before my BMT.

[fightald]

BMT only stops progression of cerebral disease. It doesn't stop or prevent the axonal damage caused by AMN nor does it affect the adrenal insufficiency. In adult men with AMN it normally is not recommended unless they are showing lesions on their MRI. As said earlier in this thread, there are a lot of complications associated with receiving a donors cells so you really need to weigh the benefits versus the risks.

I was not aware that Dr. Eichler was doing transplants in adults. I expect I will learn more at the ALD Connect meeting next month and will be happy to post again with any new info I pick up.