Has anyone experienced extreme fatigue and lack of energy after making love ? I dread making love to my husband as he cannot function for the rest of the day. He gets extremely tired and unable to function. Is this normal with this damn disease?

I haven't found this, although I am tired after, but I have attributed that to the fact that it takes me forever and most of the time I can't reach the conclusion anyway. Thankfully my wife is understanding and we do what we can to make the best of it.

Fao easy going: Ive just read your response and im interested to know if your inability to reach conclusion is due to you ALD? HAve you discussed this with your specialist and theyve confirmed its connected? My partner has this same problem but I didnt think it was because of his ALD. He tends to blame it on other things, but we end up giving up when nothing happens after trying for a while. Thanks in advance for your honesty.

Hi Jane, This has been a problem for a while and continues to worsen. I know it is connected to AMN because the sensations are reduced. Unfortunately we have found that one of the medications that I take, Gabapentin, to reduce the neuropathy at night so I can sleep makes it worse. It is better with Gabapentin than with the first antineuropathy drug that I tried, Lyrica, that made it so much worse. I have discussed the trouble with my doctors but they are not really able to tell me more than I know already because they don't know much about the disease, really not any more than they have found out from me and my research. Does your partner have trouble with unusual sensations at night? Mine tend to start out as feeling that my ankles and feet are in cold water, and this generally causes spasms and restless legs in the extreme. Does your partner have trouble walking? Thank you for your input!! Jeff

My partner was diagnosed with ALD four years ago at the age of 27. His first symptons were trouble with his balance and walking. Since then his walking has worsened. He has a scissoring gait and struggles with lifting his feet. He cant walk fast or run. In the last two years he has started having bladder difficulties. He has urgent need for the toilet and never feels like its emptied properly. He also has had a few accidents in his sleep. He has jumpy legs in his sleep. The only drugs he takes is a muscle relaxant. His adrenal blood tests have all been ok so far. He cant really drink alcohol anymore unless hes at home because his legs go like jelly and hes more likely to need to rush to the toilet. I noticed you said you were married. If you dont mind me asking, what are your thoughts on having children? I think with my boyfriends lack of being able to reach conclusion we would struggle. Never mind all the complications of passing ALD on. He does say that he has less sensitivity in that area but hes always thought it was because he was circumcised at the age 18 for medical reasons. Thanks for your speedy response.

Hello Jane, I am sorry to hear of the trouble that your boyfriend has with this disease!! I was first diagnosed with Addison's at 23 and then ALD at about 25. I didn't have much for symptoms of AMN until I was about 43, I'm 46 now. The bathroom stuff is a real nuisance, for me it goes urinary urgency and if I delay that at all it creates bowel urgency and that has created quite a few unpleasant accidents. We have been married for just over two years, I don't have any bio children but my wife has three, who are mine now. I had decided when I knew the genetics of this disease that I wouldn't have children for fear of having a girl, but now they have the ability to chose the sex of the child so that doesn't need to be a concern. My niece is a carrier, with no symptoms so far that I am aware of, and she has now had two boys and the youngest has tested positive for the gene. The late circumcision may have contributed to the loss of sensation for your man, but that is something that seems to go along with the adult form of this disease. Something that has worked for my wife and I that may help with the plan for children for you is, and I hope I can relay this without being too blunt, we try for a while and then my wife will tell me to do it manually and then on the verge of conclusion include her. Because I also needed testosterone supplements and have been using that for so many years I am no longer able to father a child. I hope some of this information can be of help to you. I feel so much for you having to deal with this, but I think you are a very special person to be with your man through it!!!! All the best, Jeff

Hi Jane: My husband has had the EXACT same response as your partner and to be honest..we have only had relations a handful of times in one year. By this I mean 5 times. The next day his fatigue is so great that getting out of bed is a chore. I feel guilty each time...like I'm putting him in an early grave. His emotions on the following day are also very erratic, but each time anger is his go to emotion to start. When he is able to discuss his feelings he says that he feels guilty about our lack of intimacy on a physical level but cannot bring himself to perform/not perform and that he has very little control over any erection. I wish i had more positive news but we have had no success fixing the issue in two years. In our case Viagra was of more problem than it was worth. If you manage to find a solution we would appreciate an update please. Best wishes, Donna

Hi Jane: Also, I forgot to mention...it might be of some importance, I do not know, my husband also has small amounts of blood in his semen. The doctor seems unable to determine if this has anything to do with AMN or the vasectomy my husband had over 18 years ago. Have any male sufferers out there discovered blood in their semen? Donna

I just wanted to chime in on the urinary problems. After losing control at night I started using external cath and bed bag. But during the day you had to be quick to the bathroom or else. I dealt with that for years then about 3 years ago I started using external catheter 24 hrs a day with leg beg during day. I am active 56 year old in wheelchair, but I don't have to worry about the urinary part. It is wonderful.

Hi there, This is my first post. How old are you guys? I'm 60. Errection is a problem and my wife & I have not had sex in several years, but true love makes up for a lot. I'm not in a wheelchair, but I can't ride my horse anymore....that sucks. Do you guys think that there is different levels of AMN? I mean I'm 60 and I use a cane for short walks (30' or so) , and a electric scooter or walker for anything longer. I hear about guys in their 20's and 30's that are in a wheelchair. I first started seeing problems in my early 30's, snow skiing or water skiing, or not being able to drink without problems until I was in my low to mid 30's. I feel very lucky. Do you think that there are different levels of AMN? Nobody, especially the docs, seem to know about our disease. Mthicksten, you're 56 and in a wheelchair. I'm 60 and "semi" getting around with a cane / walker/ electric scooter......why? You're younger and seem to be doing worse? (I'm sorry) But why? Thanks for listening to a lucky old fart, And ya know what? We ARE lucky because we could have been a seven year old boy with ALD and not be here. I'm the luckiest guy on the face of the earth.(to quote one of my heros).If you're an old fart like me, you'll know who I'm talking about! John Unsworth Fort Worth, TX

John, I'm a 42-year-old symptomatic carrier female, with 2 sons, 1 without ALD, and 1 with. My ALD boy, Andy, is 10 and has been in the Lorenzo's Oil study with Kennedy Krieger Institute since he was 19 months old. He's had 8 perfect MRIs in a row, so he's doing quite well. I wish I was. I walk with a cane, mainly for balance. I drag my feet, and noticed a few weeks ago that the right front corner of my left shoe is worn all the way through the rubber. (I wear low-top hiking shoes, for traction and foot support.) I've wanted to get a walker for a long time. In September, I had a pump implanted that puts Baclofen (a muscle relaxant) directly into my spinal column. I take Tizanadine, another muscle relaxant, orally until we can get the pump tweaked just right. I take Tramadol and Methadone for pain. My fingers are numb often. I'm definitely the worst of my family members. Why? I have not the slightest idea. I started noticing symptoms in my mid-20's, like feeling like ants were crawling on my calves, and balance issues. I've had more bladder and bowel accidents than I care to admit to. I take Vesicare and it helps a lot, but, when I gotta go, get outta my way! I wear leak guards when I go out, but not at home. I'm on Soc Sec Disability. I just take care of my boys, by myself. Well, take care, Margaret