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sooneral Message
8 Sep 2013, 04:56 PM

Hello Everyone! My name is Alan and I was diagnosed with AMN a couple of years ago. Both of my uncles died from the disease. I am 39 years old and so far all MRI's of the brain have been positive. I currently walk with a cain and am dependent upon a cart when needing to walk long distances. As many of you are, I suffer from a burning, stinging pain throughout my body, but primarily with my legs. I am currently seeing a pain management specialists, but am having some problems with him prescribing the needed medication as he isn't real familiar with our disease. If you don't mind, would those that are willing, share what medication and amounts you take for the pain. I don't take any medication other than pain meds and medication for my addison's disease. I appreciate any information you are willing to share as it might give me a baseline or perspective with my doc. I realize all of our bodies are different, but I am real curious how many might be taking more or less medication than I am currently on. Alan
stevensims Message
9 Sep 2013, 12:10 PM

Hi Alan, The only medication that worked for me is Amitrptyline I went up to 100mg and I took this at night as the pain is worse then, I currently take no pain medication as I take fish oils blended with evening primrose and starflower oils and contains the daily amount of vitamin d3, here's the eBay link :160903363697 eBay item number: Worth a try? All the best Steve
fdemiranda Message
12 Sep 2013, 01:48 AM

Pain? On the contrary, I do not feel the legs, and they move by themselves.... Do you think that is something I should be expecting to have in the future? 36 scooter dependant....
Anthony90 Message
12 Sep 2013, 04:52 AM

Fdemiranda, yes. It's called spasticity or a muscle spasm. I don't take anything for the pain, just bare it! What's up with people stating adrenomyeloneuropathy is deadly? Only the child form of ald is correct?
stevensims Message
12 Sep 2013, 08:07 AM

Anthony, there's a 40 percent chance for AMN to go cerabral, so regular scans are important. All the best
SallyBuckner Message
12 Sep 2013, 01:10 PM

My son suffered from pain, including severe spasms. The doctor told him marijuana would help, but of course he couldn't prescribe it. He found a source for marijuana and also took marinol, a very expensive drug which mocks marijuana. He took high doses, later had a heart attack which I think came from those high doses of marijuana. Other things including bed sores and paralysis of one side of his diaphragm kept him in hospital for six months. He died almost 5 years ago.
Charlie2699 Message
12 Sep 2013, 08:39 PM

Hey Alan, It sounds like you have similar symptoms to mine. I'm 41 years old and was diagnosed about 10 years ago. I will be happy to discuss my meds and findings in private with you if you would like. Shoot me an email to with any questions you have and I will send back whatever I can answer and a list of my meds.
fdemiranda Message
13 Sep 2013, 01:03 PM

I believe this can be of interest to all of us... Why the secrecy ?
Charlie2699 Message
13 Sep 2013, 02:44 PM

Why? Have you read some of the replies posted so far? Have you read the new topic created yesterday? It sounds like an advertisement for the drug. I'm not posting my private medical history out for the public to see. If someone has a question I'll be happy to answer if I can.
SallyBuckner Message
13 Sep 2013, 02:56 PM

Actually I meant to write "high doses of Marinol"--not marijuana.
mgiuseff Message
27 Apr 2014, 12:31 PM

Fdemira, AMN can be deadly. My older brother passed away from this illness at age 67. If this goes to your brain, it can just shut you down. Other people live an almost normal life. You have to start reading medical articles on AMN, and come to a better understanding of the pathways of this disease.
tmathwig Message
8 Jun 2014, 05:57 PM

My neurologist prescribed Baclofen 10mg 3x per day for leg stiffness, knee and joint pain and spasms. She feels like the tightness of my leg muscles was causing the pain. Relaxing those muscles has helped with the pain.
MissSheryl Message
9 Jun 2014, 04:32 AM

All the postings on this are from males. I am female and thought AMN applied to women and ALD to men. I have a very experienced pain specialist. My symptoms are all in my legs; a burning pain and spasms that has intensified over the past 25 years. I have been taking oxycodone and diazepam but they only dull the pain a bit. We are experimenting with many other drugs and combinations. Lately we are using ketamine in a transdermal cream. This is a new effort and so far no help. My pain doc is very committed and has more ideas. I have titrated down on the oxy since I was in hyperalgesia which prevented other drugs from working. It is a very frustrating situation. I was also in a study at Hopkins for Lorenzo's oil. Also no help and the study was terminated.
mgiuseff Message
9 Jun 2014, 11:41 PM

Sheryl, God bless you. My mother passed AMN onto two of the four brothers. My oldest brother Jerry passed away from the illness three years ago. I don't know where my illness will take me, I just pray. Mom had trouble with her legs late in life, not exactly sure what caused her to lose her ability to walk. She had dementia. She was the perfect mother. Father died at age 39 from pancreatic cancer. Mom was a nurse, and she took care of father until he died in January, 1958. For a female, you will have different reactions to this disease. I think you should talk to a neurologist. My endocrinologist had never seen this illness. It was a new one on him. He always enjoyed learning new things. Sheryl, if I were you, I would google 'AMN females'. See what you get. You will get lots or relevant information on what's in store for you. Sheryl, I would not worry about AMN. I hope you have a wonderful summer. Sincerely, Mark Giuseffi
Lonelycat Message
10 Jun 2014, 05:20 AM

I'm with you. I have AMN, am 27, had symptoms for maybe 4-5 years. I think sharing our medications is very important because they help to control the symptoms. Sure they don't solve the problem, but in the meantime, we can heal the pain while we can on this crazy game we call life. I take baclofen, 70 mg per day spaced out for spasticity anti depressant to elevate my mood from the doldrums of depression hydrocortisone and fludrocortisone for the adrenal portion. vitamin d2 (prescription), this is a new one. I have an endocrinologist concerned about my bone health because extended use of steroids can lower you bone density. finally I use painkillers. i won't say which, as everyone is different. suffice it to say, it helps on a day to day basis controlling the hurts and aches. I know enough to help myself on a daily basis, but as I know there isn't a clear solution at the moment. The best we can do is live every day as happily as we can and smile and help others along the way :) also I have an excellent support network: my beautiful girlfriend, parents, doctors. My cats are fun too! They're all concerned as much as I am. Loves! G
strongsurvive Message
12 Jun 2014, 01:39 AM

Unfortunately I live in a small community with doctors who are uneducated and seem to have no interest in helping with my symptoms. I have one doc who canceled me after I asked her to address my pain with options outside of pain killers and asked if she was willing to take the extra time to research it to better treat me. I have blown discs in my lower back and constant leg pain. So I'm having trouble moving cause of my lower back and leg pain that radiates. I'm not with a new doctor who only seems to care about treatment without meds. I'm frustrated cause I've tried everything aghast like vitamins, non narcotics & regular stretching & exercise already. I've suggested lyrica a couple times as I've heard it helps with nerve pain in legs. Any help or suggestions please, I'm getting desperate as I feel no one understands or wants to at least treat my symptoms till we find a working treatment or even better cure :-(
strongsurvive Message
12 Jun 2014, 01:47 AM

Would anyone happen to have a doctor who knows about this condition & could possibly make recommendations to my doc or e'en letter of recommendations for a single mom taking on a son who had a bmt and is now unable to walkhear and can barely see in addition to a two year old daughter keeping me on the run. I can't continue to bare my levels of pain, b a care taker & a good mother when I'm constantly trying to not b irritable and laid up on the couch from the pain and then overtired as well from lack of sleep at night. I need an angel or a few to help point me in the right directions for my own sanity, to b able to enjoy what mobility I do have left add my mom (also a carrier) is already stricken to a walker daily. Thanks for any input out there please? :'(
bsc78 Message
16 Jun 2014, 03:21 PM

Strongsurvive, where do you live? Are you willing or able to travel?
lowrider38 Message
17 Jun 2014, 01:13 PM

There is a specialist in this disease at Massachusetts general if your anywhere near Boston. I travel over 5 hrs to see him every 6 months.
kedwards2013 Message
4 Sep 2014, 04:32 PM

I haven't had any luck with painkillers. The only medication that has significantly helped me is Lyrica, which is regularly prescribed to patients who are Diabetic & experience nerve pain. I was diagnosed at the Mayo clinic with my mother present. The doctor described her lesser symptoms as Asymptomatic. Obviously our symptoms are varied. As far as MissSheryl's comment goes AMN can only be passed from your mother to a son, thats why its also referred to as X-linked ALD. If you go backwards in your family tree you should be able to find out where it started. My mother was adopted so our search started & ended fairly quickly.