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We are still not sure my son has ALD or AMN. Can somebody share experinece with AMN.
What are the test results that confirm AMN? Only VLCFAs or something else?
What are the symptoms?
Can progression stop by itself?
Any treatment?
BMT?
Thanks a lot.
Amitriptyline Falls Elavil Spasticity Baclofen Ataxia Weakness Pain Depression Tremor
Here are two pages from the ULF site describing the two conditions..
AMN-the adult form
http://www.ulf.org/types/AMN.html
ALD-the child form
http://www.ulf.org/types/XALD.html
Hi Shep,
Thank you very much for your reply. I cannot express in plain English what we are going through. Some doctors tell us my son ahs AMN, the others ALD. We don't know what to do next. I hopw more people reply with some advises. We did not have this condition in oyr family before.
Thanks again.
From what I know, which is very limited, if a child (younger than about 14 or so) is diagnosed, it is considered ALD. If an adult is diagnosed, it is considered AMN.
I have AMN and my symptoms didn't show up until I was about 27 years old which is pretty common for AMN. From what I read, ALD usually shows up around the age of 10 years or so. Of course there is lots of wiggle room on the ages.
I truly feel your pain about your son, as do many others on this site. I have a son (18 months) and a daughter (4 years). The nature of AMN/ALD is that all of my sons will be unaffected and all of my daughters will be carriers. I am wrestling with the fact that I have to tell my daughter when she is older that she is a carrier and that she can have symptoms like her daddy who walks funny and falls down a lot. Not to mention that all of her children will have a 50% chance of having the gene.
It took about 8 years for me to get a correct diagnosis of AMN because I am the first in my family too. Then I had to inform my family about the genetic aspect, and I watched my mother and brother get tested and show positive as well. It's heart wrenching, but it can pull you closer as a family.
Be strong and keep asking lots and lots of questions, you will get answers. The most healing treatment for me is a hug, a smile and a laugh.
Thanks for your reply.
What other symptoms except walking do you have? Do you have brain involvement? How often do you test VLCFAs? What tests confirmed your diagnosis of AMN? Was your spine MRI abnormal? Do you have Addison?
Sorry, too many questions.
Thanks in advance for taking the time.
AA,
Don't worry, you are not asking too many questions, this is the place to do it.
I was tested only once for VLCFAs, about 5 years ago. That is the test that confirmed AMN. I admit that I don't keep up on all my tests, it is hard for me to do because my doctor is at the Cleveland Clinic ($$$$) and my health insurance is questionable at best. My last MRIs were about 6-7 years ago, and at that time they were clear. I need to have another done, but currently I am unemployed, so it will have to wait. Doctors usually recommend once a year with AMN/ALD. I was tested for Addisons disease and it was negative.
I have no brain involvement, but if you ask my wife, she might disagree ;). I am a Mechanical Engineer and I feel as sharp as ever. I don't expect that I will have brain involvement in the future. From accounts that I have read, my case is on the mild side. I enjoy robotics, woodworking and working outside although I have modified most things I do to accommodate my difficulties.
I began to develop drop foot when I was about 27 which was mainly from the spasticity in my calves. I am 41 now. Over time, the spasticity in my legs has very gradually gotten worse. I have never had the experience where I have said "I am worse than yesterday or last week" but I mostly say "I am worse than I was two years ago, but not much." I manage the spasticity with about 90mg/day of baclofen, with some Elavil (amitriptyline) to help with some of the neuromuscular pain (mostly burning feeling). I also wear ankle foot orthosis (braces) on both legs to hold my feet up when I walk. Baclofen and the AFOs have tremendously improved my quality of life. I do have Ataxia which is the loss of the ability to coordinate muscle movement in my legs. I walk slow and shaky, and at times I use a cane.
98% of my symptoms are in my legs. Weakness and spasticity are the major symptoms. I have lost skin sensation on portions of my lower legs and feet. I have all but completely lost my lower leg and foot proprioceptive nerves, which tell me what angle my ankle and toes are at, and where my feet are relative to my body. This is another cause of drop foot.
I have burning sensations all the time in my hamstrings and calves, but the Elavil manages that to an acceptable level. Without the med, this symptom is probably the worst. This comes and goes, and I can usually relieve it by walking and moving the affected muscle.
Clonus (http://en.wikipedia.org/wiki/Clonus) is another symptom that comes and goes for me. It is an uncontrollable shaking of my legs when reacting to a reflex. Sometimes that is a simple as just walking or contracting a muscle. For me, there is no pain at all, but it can be extremely frustrating when trying to walk on very shaky legs. It is also one of the symptoms that I can take light heartedly because there is no pain at all and at times my legs shake extremely violently and it always is a conversation starter. It happens mostly when I am nervous or watching an exciting sporting event. For me, when I sit, my legs will go straight and shake violently, which always gets attention. It actually feels good, and my legs are relaxed when it subsides.
My calves often cramp at night, several times a night. I can manage some that by keeping my legs as warm as possible. I wear very heavy sweat pants and socks and layer the blankets on my legs only. I have a ritual were I can get out of bed and stretch my calves almost without waking up. I can go right back to sleep.
I do experience a slight tremor in my arms and hands, but it really doesn't bother me, and I am not sure that is related to AMN. I have non-affected family members with the same condition.
At one time, I had a discoloration of my face. I had dark brown and black splotches on my face, but for some unknown reason it went away.
I do have some other related problems (Bladder dysfunction), but I won't go into that now as I am realizing that I am telling the world every detail.
I deal with depression on a daily basis. The good news is that my depression in not due to a chemical imbalance, it is due to my condition. For me this means that I can control the depression with attitude adjustments and activities that make me feel good. I *strongly* recommend that this part of the condition is not overlooked. For me, it is just as important to deal with as all the other symptoms, not just the affected person, but all people who care for the affected person. This is very important. It WILL make a difference.
Please keep in mind that these are my symptoms. All of us experience different things with different severity.
I hope I have enlightened and not bored or scared you. You truly are not alone.
thanks Shep for your detailed message. This is a teriible diasese, but at least to have it in mild form is a good thing. I wanted to ask if you are taking any supplements, oils, keeping low fat diet? Also, did you have demyleination in your spine or your spine MRI is normal. My son has normal spine MRI, but one doctor said it's still can be AMN.
Thanks for your time.
AA, no I don't take any oils or supplements. I should. I do try to watch my intake, but that is more from a general health standpoint, not so much for the VLCFA. I am not a good example for watching the VLCFAs going into my system.
My brain and spine MRI were both clear.
Best of Luck to you.
Shep
I am 29 and I have had AMN symptoms since I was about 25. I was diagnosed with ALD in 1989, but never had any symptoms. The symptoms that I have now are an unsteady gate, weekness, neuropathy, pain, bowel and bladder issues, and loss of control in lower body. I haven't had my VLCFA checked in several years, but you can see the changes in the MRIs of my spine and brain. I also have had Addison't since 1989.
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