Hi!

[joyepperhart]

I am a 42 year old female. I have 6 children, 3 boys, all with ALD, and 3 girls, two are carriers, one hasn't been tested yet. I have been experiencing amn symptoms for years now. I am happy to have stumbled onto this site and I hope to make many new friends!

[wendylooker]

Welcome to the group. I too am a symptomatic carrier of AMN and have 2 Sons and 1 Grand-Daughter. One of my Sons has been tested and is clear, however the other hasn't been tested and doesn't want to be, unless he shows any symptoms. I'm currently sitting in a Hyperbaric Oxygen Chamber, as I feel this helps with pain, fatigue and spasticity. I use the chamber in Leeds twice a week and it's better than any of the medication I've tried e.g Baclofen, Tizanidine. Hope you find the help and support you need for you and your lovely family xxx

[Shelcee]

Hi there, I am a 43 year old female carrier an am also exhibiting symptoms. We've known of this disease in our family since I was 8, my brother had ALD and died aged 33. We did IVF with PGD to determine which embryos we could transplant so we are lucky enough to have two girls who are not carriers, 50% of our embryos were affected. I struggle with pain and spasticity on a daily basis along with urgency and incontinence of sorts. I use a TENS machine to assist with spasticity. It is nice to have this group as there is limited access to neurologists with any knowledge of this awful disease and how to manage it in my country. I hope you find this group useful, its a great place to get support and knowledge.

[joyepperhart in reply to Shelcee]

Hi there. How old was your brother when he was diagnosed? My son was 12 and is now 25, but his walk has declined some. His seizures aren't as often too.

[Shelcee in reply to joyepperhart]

Hi joyepperhart

My brother was 10 when diagnosed, he also was diagnosed with Addisons at the same time. It was in his mid to late 20's when his condition deteriorated and by the time he was 30 was no longer able to walk, talk or feed himself. So hard to watch him go through it. I hope the decline in your son is not as bad as my brothers. Best wishes and enjoy today for no one knows what tomorrow brings with it.

[tieaknot]

Hi! Welcome! am a 41 y/o female symptomatic carrier with AMN. I have 2 children. We tested our son immediately after I was diagnosed (he was 4 at the time...now 6) and he is negative. Our daughter will be tested when she is a little older (she is 9) to see if she is a carrier. I was adopted as an infant so I have no known family history...so I am hoping and praying this begins and ends with me in my family. My thoughts and prayers are with everyone here, especially those with affected sons and relatives. Hoping a cure is around the corner!

[jolocny Volunteer]

Good morning, Ladies! Wonderful to wake up and find this in my email! Thank you all for sharing on HealthUnlocked ... as Shelcee said, it's a great source of information and support. I'm rather advanced in my AMN - in a wheelchair for 3 years now, almost no feeling in my legs. I have no family history, my daughter (33) is not a carrier and my son, at 37, has yet to be tested. My biggest concerns are incontinence and being an part of life! I see a uro-gynecologist and his help has been wonderful (his nurse is amazing!). I'm blessed to have docs at Kennedy Krieger (Johns Hopkins). I have great hope in the stem cell research that's being done - I don't know as it will help me but for all of you that have mild symptoms. I'd love to try it to find out if it would truly arrest progression!