I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems 93% of boys with Addison's have ALD. We had no idea. It also seems unusual that ALD doesn't show up that late in live. Our son had the pediatric type of ALD. Once we realized he had ALD we went to Kennedy Krieger at Johns Hopkins and was advised he should have a bone marrow transplant. He had scored a 15 on the MRI and they thought his ALD had gone to far but after testing him they decided he was very functional and thought it was worth a try. Sorry to say he can't take care of himself and is on a feeding tube. There were many complications during the transplant and he lost too much ground. We are always looking for new treatment for patients and pray for the brain to make "new connections"
I am feeling weak in my legs and my memory stinks! Could be menepause. A doc told me I have arthritis in my hips but I wonder if it isn't ALD. I fall and my gait is different. I would love to hear if this is odd or normal. I don't have the headaches others have talked about. Please let me hear others opinion.
thanks, Brenda
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ALD Mom's who are carriers and Son's who have ALD
- By BMA
- Posted July 25, 2008 at 9:42 pm · 16 replies
- In X-linked adrenoleukodystrophy (X-ALD) - Female carriers
- Shared with the public
- Edited July 29, 2008 at 9:46 pm
Explore topics in this discussion:
Exercise Schizophrenia Surgery Arthritis Stroke Fever Bone marrow transplant Anxiety Leukodystrophies Menopause Pain Addison's disease Memory Lupus Graves' disease
16 replies
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- Newest first
- By JAMIESBUSY
- Posted July 28, 2008 at 12:19 pm
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Hi Brenda,
I would think that your gate is the Carriership of ALD.
Im a carrier and i have a strange gate. My mother and sister are also carriers ans have difficulty walking, my sister has headaches.
If youd like to talk please don't hesitate to give me a call.
661-943-2150
http://groups.msn.com.leukodystrophyfamily
above link is also a support group for Leukodystrophies.
- By jolocny
- Posted July 29, 2008 at 11:56 am
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Hi Brenda,
I must say that I've wondered about my memory, too, is it menopause or ALD? Docs tell me it's a combination... as I get more tired through the day, my gait, balance AND brain are all affected. I use forearm crutches for stability, they've been a huge help. A nap clears up the brain-fog - if you can give yourself those few minutes! Please remember that you must take care of you first, so you can take care of your other obligations as they come up. I've had to do that so I can give more to the people in my life. My hubby will tell you that I'm still pretty stubborn about doing things for myself ~ but I also give in when my body tells me to and recoup! This is getting lengthy - sorry! I'll catch=up more with you later!
JoAnn
- By wenALD
- Posted July 30, 2008 at 6:24 pm
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I too am a carrier with symptoms. I have problems with my walking---my right shoe wears out first with holes where my big toe is. I also have balance problems and use a walker when walking any distance, or a cane.
You said your adult son just found out he had ALD. What were his symptoms? My oldest son has been diagnosed with ALD since he was 12. He wasn't given much hope then, but he is now 33. He does suffer from brain damage, but has been employed full time since he was 19.
I am so sorry about your son suffering following a bone marrow transplant. They have always made me nervous, even if the other choices don't leave a lot of hope.
You may call any time. I live in California. (916)624-4215.
I wish you the very best.
- By WeLoveEvan
- Posted August 25, 2008 at 2:36 am
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Oh Brenda, the fact that you were at KKI and no one educated you on the possible outcome for you as a carrier is unacceptable. They have a trial for carriers with symptoms right going at on at KKI. I suggest you contact them. Gina
- By KateNDalton
- Posted August 25, 2008 at 4:25 pm
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After joining this site, I emailed out to KKI to see if there is anything that I can do to help since I am a carrier. I don't have any symptoms right now (other than a terrible memory that everyone assumes is because I don't pay attention). I haven't received any response back yet. I'm anxiously awaiting. I didn't receive any information while I was out there in March with my son.
- By KateNDalton
- Posted August 27, 2008 at 11:17 am
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I received back information yesterday from KKI. As an asymptomatic carrier there is nothing I can do to prevent the onset. Once symptoms start (if they start) I can be put into the study to see if they can delay any furtherance of my symptoms. I wish it was like my son where I could just be put on it so that maybe it could stop or delay my symptoms before they begin. I hate not being able to control all of this but that's why I'm not God.
- By jolocny
- Posted August 28, 2008 at 3:46 pm
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Symptoms may come, but it'll be better all around if you start taking care of your body NOW! Eat low-fat foods (it's the fats that we have to control in order to maintain and keep progression away), stay physically active and strong, love yourself! It may seem inevitable that you'll have symptoms ... but these are simple things that will give you the edge, besides, it'll help with taking care of your son! I never knew about AMN (no family history), and I sure would've done things differently if I had! Your faith will take you a long way, too!
You've got lotsa love and support here!
- By KateNDalton
- Posted August 29, 2008 at 8:45 am
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I can start eating the low fat foods now! That's wonderful! At least this way I can do something now. I had a fever yesterday and my legs and hips are still aching today. I went to the doctor and he said the aching was due to fever. I, of course, thought it was the symptoms starting. Every little thing that happens to me I think is the start of AMN. I'm also a runner so my mom pointed out to me that maybe its just my joints from running. I'm going to stop running and find an exercise that's easier on my joints. This support group I've found here has been such a blessing! I feel like I can vent and all of you understand. I'm very grateful today for all of you here.
- By cubsportgal21
- Posted September 13, 2008 at 2:22 pm
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Hello Brenda!
Your story touched my heart. My mom had syptoms similiar to yours and in 2005 she diagnosed with lupus. It's pretty bad for her now but she is still functional. What really caught my "eye" was that your son had that surgery. They wanted to do the samething to me but my mom said NO! and i was functional at the time but they did do a spinal tap on me and i was barely walking so after that i completely stopped walking. They did more damage by that spinal tap but my mom prayed and people prayed for me. So now i have been walking for almost two years now. Brenda don't give up on your son because my mom didn't give up on me. The doctors told her i wouldn't be functional again and she wouldn't be able to take care of me so to put me in a hospital.
- By BMA
- Posted September 13, 2008 at 2:27 pm
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At the time the doctors at Johns Hopkins and University of Minn said Matthew's only chance to live was to have the bone marrow transplant. Sorry to say that after the 6 months in the hospital he lost all ability to function (he can breath on his own). However the transplant did stop the progression of the ALD but during the transplant there were so many complications it just went the wrong way.
- By marinemomkerry
- Posted June 28, 2009 at 7:35 am
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my son also x-ald, brain damage from stroke after transplant, blood pressure. part of the risks.
hes still his happy self though.
i am a carrier, two of my daughters, my mother, but none of my other sons. i have an identical twin and older sister as well, all with children, none of them tested. my mother and grandmother also have had graves disease, thyroid linked to adrenal. my mother had hers removed as a child and had problems later as well. she and i and i believe my identical twin too, all suffer from carrier symptoms. my mother was diagnosed a few years ago with MS, but its actually this. glucosamine DHEA other supplments help. but the pain is fairly constant now though could be exhaustion too. my regular email is marinemomkerry@gmail.com I have met other ALD families on here who were just diagnosed a few months ago who were not even told theres a loes score or that bmt is an option. there are so many uneducated medical people in this country!
- By Quiller
- Posted June 28, 2009 at 8:40 am
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I just wanted to let you know that my son had a BMT in 1991 at age 9 and is now doing excellent and living with only Addison's disease. It is frightening and there ar no choices and you must listen to your heart. I am also a symptomatic carrier and went through may dotors telling me all kinds of things until my son was having his BMT that is when his doctor spoke to me of my gait etc. I was recently on the study at KKK but it was suspended. Be good to yourself because you will need your energy to care for your son as well as yourself. Keep in touch and if you wish to chat just holler.
- By BMA
- Posted June 29, 2009 at 3:37 pm
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SOOOO happy your son is doing well! The folks in Minnesota are great. You are right, wish there were more choices. Brenda
- By BMA
- Posted June 29, 2009 at 3:39 pm
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You are right about the Leos score not being known to most people or doctors. It is a so important when it comes to making big decisions. Brenda
- By NikkiFoster
- Posted October 15, 2009 at 7:35 pm
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I'm only 23 and my son is 7. He was just diagnosed in September with ALD and is suffering with neurological symptoms. He is almost blind and deaf. My mother was diagnosed with schizophrenia when she was 20 but medication has never helped her. The doctors are currently testing her for the gene and think that this may have something to do with her condition. I have been confirmed as a carrier with high VLCFA's in my blood. I've been medicated for anxiety and panic attacks since I was about 13. I am so worried that this is what is affecting me and with everything going on with my son I feel like I'm losing my mind. The doctors said there is nothing that can be done for my son. It feels like they just sent us home for him to die.
- By sjm
- Posted October 15, 2009 at 9:11 pm
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I don't know if you received my email. But why don't you get a second opinion for your son from the Minnesota children's hospital who specialises in ALD and BMT. They have the best doctors and research for ALD.
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