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How old were you? And now?

Unsworthj Message
16 Sep 2013, 06:17 AM

How old were you when you saw AMN? How old are you now?
Arod Message
16 Sep 2013, 10:43 PM

I was 32 when I first started noticed something was not right. I was finally diagnosed 3 years ago. I am now 45
shane1971m Message
17 Sep 2013, 04:13 AM

I was walking like I was drunk at around 27, I am now 42 and don't seem to be much worse in the walking department although need forearm crutches permanently and can't walk long distances.i was diagnosed at 32 years of age.
chrisphillips71 Message
17 Sep 2013, 12:43 PM

I learned that I had AMN when I was 19. I am now 42 and use a wheelchair.
nikolahn Message
17 Sep 2013, 01:12 PM

With 42 noticed, 47 diagnosed, now I am 51 years old. Long distance walking problem. Spastic walking. Mentally stabile. What is the meaning of "AMN has not gone to my brain"?
Anthony90 Message
17 Sep 2013, 03:55 PM

I was walking with a limp at 19. started using a crutch at twenty, two crutches at age 22. and always wheelchair long distance so I didn't fall as much or hurt myself. I'm still moving my legs to walk and I'm almost 24. I have noticed the progression this passed year and I kind of hop on the crutches for better speed or else I lag behind lol too slow for my son and girlfriend. Looks like me and chrisphillips71 begin right at the age it could! dammit. Be positive and maintain a positive attitude. Be outgoing, communicate with people. I meet people everyday because of my outgoing personality and it keeps me up. I have to be strong for my boy and my girlfriend.
fdemiranda Message
17 Sep 2013, 04:32 PM

Keep it up Anthony and all the very best! Attitude is everything... Noticed at age 24, diagnosed at 29, now 36 wheelchair dependant (I use a fabulouse scooter - Luggie - is the best!)
Anthony90 Message
17 Sep 2013, 04:37 PM

Electric is the best! I use a quickie manual chair in stores and next to my girl while she runs to stay fit. I have a jazzy electric chair at home. Great for around the house chores and playing with my son. Heck, even when I want to be lazy! We're on our upper body all day, worse than gorillas!
Charlie2699 Message
19 Sep 2013, 03:14 AM

Started at age 31, diagnosed at age 33. Now 41, walk with a cane and have a scooter for long distance. Retired from work about a year ago and feel better than I have in a long time. I feel like the progression has slowed considerably. I'm still in significant pain every day and have considerable stiffness in my legs but a strong workout regimen (2 hours a day, 4 to 5 days a week) and a significant amount or meds from my doctor have me feeling as good as possible I guess.
shane1971m Message
19 Sep 2013, 10:00 AM

Damn, would be nice to retire at 42
lowrider38 Message
19 Sep 2013, 08:59 PM

Charlie2699 do you find the excercise helps your legs. My doctors tell me if I go too hard in the gym with my legs I could do more harm then good. I stopped doing legs cause it felt like I was tearing my self down, I'm 27 so I still have that full throttle attitude when working out. I haven't been doing legs for a long time and I'm getting worse not better.
Anthony90 Message
20 Sep 2013, 04:22 PM

lowrider38 I find stretching is best. I only work out upper body. I try to walk as much as possible with forearm crutches
lowrider38 Message
20 Sep 2013, 05:40 PM

I hate stretching but I probably should, I workout 3 times a week 2 different upper body parts each time and even that really stresses out my nervous system.
Charlie2699 Message
20 Sep 2013, 05:54 PM

Both of my doctors (primary and neurologist) agree that I should do whatever I feel safely works for me (including legs). My primary prescribes me Testosterone to help strengthen my muscles and relieve a lot of the fatigue. My testosterone levels were at the very bottom of the normal level so I get an injection every two weeks. It helps tremendously. Both Kennedy Kreiger and any previous doctors told me to keep doing whatever I'm doing because the nerve conduction tests say that I shouldn't be able to walk for the last five years. Working out helps incredibly since my balance is really bad when my muscles are stiff. Keeping the muscles stretched and comfortable only makes sense. The neurologist was extremely happy with my strength increase let visit.
Charlie2699 Message
20 Sep 2013, 06:26 PM

I think of it this way. The nerve damage is making the muscles still, painful and weak. If you don't work them out, the muscles will only waste away further (especially for those like me taking Hydrocortisone for Addison's) because the hydrocortisone or prednisone causes the muscles to waste faster. How do you think you will ever be able to walk in the future?
lowrider38 Message
20 Sep 2013, 11:38 PM

I'm also am on hydrocortisone, been for about year in a half. My thinking with the nerves is you over stress what nerves do work cause they are compensating for the ones that don't. I'm thinking of doing light weight high rep stuff with my legs like they have you do in physical therapy.
Charlie2699 Message
21 Sep 2013, 06:23 PM

Yes, that's mostly what I do. I do increase the weight a little at a time because I did what you did and stopped working legs for a long time and now they are pretty weak and I'm trying to slowly build them back up. Also try the spin bikes if you can. Spinning seems to work a lot of the muscles that don't get worked from just lifting especially the ones that help with your balance. I always feel much better after a spin class. Since I've been working out harder for the past year I've felt much better and feel like the damage to my legs hasn't gotten any worse.
lowrider38 Message
21 Sep 2013, 10:37 PM

K, thanks for advice.
sapphire7 Message
27 Sep 2013, 05:09 PM

Hello Y'all I'm from the great state of Texas. Unfortunately the heat down here is a energy drainer. But it's a nice change from WI where I had to dig out snow! I am a female with XALD. Originally diagnosed with MS with my dad, which all changed when a 6yr,old nephew was diagnosed with ALD in 1992. We were all tested & since we knew it was the X chromosome, it involved 4 daughters & their children. The nephew has past away but a g-nephew had a BMT & is thriving. As for me, I turn 61 manana & even tho' I use a Phantom 600 to get around, I have many good days. The fatigue is the worst. This year I have noticed more numbness & pain in my upper body, lower extremities move, but have little strength. I still have trouble balancing doing too much or too little. My mind still says I can jump out of bed and start dancing. When I dream I'm walking long distances looking for my chair. It has taken me 2 hrs. to type this so I need to pause now & hope to hear from this this group that only we can share. Till next time...sapphire7
mgiuseff Message
27 Sep 2013, 09:59 PM

Sappire7, God bless you. Keep your spirits up. I am familiar with all the symptoms of this disease, as I have some of them and did extensive research about the illness. If you can keep a healthy mental attitude, I have to believe that can be a real asset. I'm trying to go on disability. I'm 64 in December, and don't feel I can do any traditional jobs which require long periods at work. When my disability comes thru, I will start therapy again to strengthen these legs. Keep on keeping on Sapphire. If we ever have a get-together for those stricken by this illness, I'll be sure to save a dance for you. Keep smiling, Mark
Unsworthj Message
27 Sep 2013, 11:20 PM

Hi mgiuseff I do my best to share the good attitude of you and sapphire7. I think we are lucky with AMN compared to the poor children and families with ALD. Hey sapphire7, I'm in, and from, Fort Worth, where are you? I don't know about you but my legs do a lot better in hot than they do in cold. Hey mgiuseff (Mark), I just turned 61. How do you get around? Are you in a chair? Just curious because of our similar age. If you don't want to say, I understand. Thanks to all, John
mgiuseff Message
22 Jan 2014, 02:31 AM

Sapphire, Nice to hear from you. In fact, I move to North Georgia from Cincinnati, Ohio very shortly. The winter has been tough on everyone here. I never liked cold weather. In December, I turned 64 and got approved for disability. John, I'm still walking, but have some balance issues. My legs feel weaker and I do want to start exercising again. I used to be a very good golfer, but since my mid-50s, my scores gained ten strokes. I'm used to beating my buddies. This has been a long journey for me, Addisons at 11, my older brother dying of ALM at 67, and my diagnosis two years ago. Been on steroids for Addisons for 53 years, incredible. But with my friends, my wife and my two daughters, life has been good to me. Best of luck this year.
sapphire7 Message
1 Feb 2014, 05:47 AM

mgiuseff. Mark Have you moved to Georgia yet? From what I've heard it's gorgeous. You might need to get a translator at first so you can learn their language. I had to ask many times what was being said, then a co-worker gave me pages of Texas words. I know it sounds silly but boy did it help. I am especially glad to hear you have family & friends for support. With mine up north there is little they can do. I'm staying down here tho' cuz I do now have a family with people I've met. Been here 30 yrs in March. Hard to believe. My fatigue has kept me in bed more than usual so I am trying to get P.T. started. Especially 'cuz I want to take you up on that dance you offered, if we can get a group together. Anything possible, right? Take Care, I'll look forward to hear about Georgia & how you all are doing. Deb Unsworthj-John Hi, just got back on today after not being able to for a while. I live in Denton, 'bout 30mi nw of Dallas. We are practically neighbors. Have you found a good doctor(s) that know or learns about ALD/AMN? I have a great one. He's farther than I'd like but the only one I found who knows about the Leukodystrophies. I do have to agree that I feel better in the warmer weather than the frigid climate I came from. But just like anyone else, I have to be careful about it being too hot. If I'd stayed up north, I'd have to put ski's on my chair but haven't figured out how to stop my chair without a brake. Still working on that. I didn't see much about your symptoms, what you do, etc. So if you don't mind sharing, I'm all ears, or eyes in this case. Look forward to hearing from you...and anyone else to would like to join us on this network. Where else can you talk about diseases, W/C's, therapies and whatever you want & aren't talking about a "B" movie, till then....Welcome February!
mgiuseff Message
1 Feb 2014, 06:31 AM

Dear Sapphire and friends, We will be in Georgia soon. Can't wait for the warmer weather. My AMN causes me some balance and leg weakness issues, but I keep a good attitude. My brother passed away from the same illness at 67. Nobody can give me a prognosis, so I just take it a day at a time. We can have a get-together in Georgia, if you can travel that far. I have a beautiful rental home there. It's on VRBO, #415033, or google 'Bella Montagne.' I welcome you all down. It looks out over the foothills of the Appalachians. I hope 2014 brings you good news. There are gobs of drug trials dealing with AMN, so maybe we will get good news soon. I never let my Addison's get me down, and I feel the same way about AMN. We're all just lucky being here. Take care, Mark
Unsworthj Message
1 Feb 2014, 07:37 PM

Hi Sapphire Deb!....or should I say hi neighbor! Thanks for the note! I turned 61 in September. Symptoms started in my mid 30s. I couldn't ski (water or snow) as long or as well. Couldn't walk as far etc. Then the foot drag and tripping. You know the drill. I can go short distances (20 feet?) with a cane but slow and awkward. In the house I use a walker. Any more than that I have an electric scooter. I owned a specialty construction company. I worked as long as I could, but I finally was unable to do my job, go to job sites to bid or check on the guys etc. I was diagnosed at U.T. Southwestern in 2001. I sold the company in 2004. I think I am very blessed in that #1: It didn't manifest as ALD when I was a kid. and #2: I was able to work as long as I did. The first half of my life was a BLAST! (not that I'm complaining about the present) I posted the question on this site "how old were you when etc" and it confirmed what I was thinking that there are many out there who were in a chair at a much younger age than me. As a famous ball player once said "I'm the luckiest guy on the face of the earth!". You said that your doc was really good. Is he doing anything for your AMN? It took years for the docs to even diagnose me. I don't see any docs for AMN because there's no treatment and I haven't found anyone locally that ever even heard of it. U.T. Southwestern sent me to Mass General and Johns Hopkins. If your doc is doing you some good, would you mind sharing contact info for him? Where is he? If you want it, my e-mail is and my phone is 817-922-9994.
Unsworthj Message
1 Feb 2014, 07:49 PM

Hi mgiuseff Mark If you're 64 and still walking AND were able to hit the ball straight in your mid 50s,, you're doing GREAT!!! I'm very happy for you. Keep it up! Thanks for sharing. I guess everyone with AMN is different? I was just trying to get a general feel for what age and to what degree everyone was. You can read all about it, but I think they take averages and try to lump everyone together into one basket. Thanks again, John PS: Deb, if you read this, I just saw that I didn't sign my name on my note to you. Sorry. . As you can see above, it's John.
MissSheryl Message
2 Feb 2014, 05:26 AM

Sapphire7, I had a trial spinal cord stimulator. It made my symptoms permanently worse. I am in Plano. What part of Texas are you in? Also had an intrathecal pump implant. A dismal failure.
druck1325 Message
3 Feb 2014, 02:42 PM

my younger brother was diagnosed with ALD when i was about 15. My brothers, other family and I were all tested. We discovered that my 2 uncles and myself all had AMN. I'm 33 now and have not shown any symptoms however my brother and uncles have all passed away many years ago. I was originally on Lorenzo's Oil when I was first diagnosed and stopped that for awhile but ultimately have just been following a low fat diet since I've been diagnosed.
dryder845 Message
9 Feb 2014, 02:05 PM

Thank you all Thank you all for sharing your experiences. I am 49 year old female with AMN. My son is also on this group. It has been a great benefit to talk and hear other experiences. My father died at 52 in 1995 of this disease. The myelin in his brain was effected and shut his system down within a matter of months after his legs stopped working. I went to many doctors who didn't believe the diagnosis of my father and would not go further to help me find out if I had it. When we almost lost our son two years ago, he was diagnosed. I have been losing my balance, tripping and falling down. Luckily, I have not broken anything yet. It's seem that the cold makes my legs stiff (NY has been below 0). I am worried what the future will bring and trying to get to my bucket list before its too late... My son and I both go to Mass General in Boston and I feel it is necessary to both have a doctor that understands the disease and teach him about the issues of this disease so he can help the children that are effected. Thanks
mgiuseff Message
10 Feb 2014, 05:41 AM

Dryer845, sorry to hear you share our illness and had such a difficult time getting a correct diagnosis. Reminds me of 1961 when I saw five physicians before getting a correct diagnosis of Addisons. If you can escape the cold north you are welcome to join me and my wife at our rental home in the mountains of Nort Georgia. It's on VRB0, property number 41055. Invitation welcome to everone on this blog. And God bless you all.
Aylott Message
16 Apr 2014, 05:26 PM

My husband didn't begin to notice symptoms until he turned 35. He was a very active athlete(hockey player) and always worked more than 40 hrs per week. When he turned 42 he began trying to hide his more severe symptoms from my daughter and I. At 44 he had a "I've fallen and can't get up" event in the parking lot at his workplace. He was diagnosed five days after his 45th birthday. He is now 47. He has only downgraded once according to the doctors,but, we are back to see the neurologist in two weeks and expect to hear negative news as he has been feeling much worse at home. My daughter was always "a clumbsy girl" according to her pediatrician, but was confirmed positive for AMN at 21. She will be 24 in May this year. Females are NOT just carriers, they are also sufferers. We have found that not enough of the literature explains this FACT properly. I hate to say it but our best advice is keep a positive attitude! Tell all them Doctors with negative opinions, YOU plan on living forever, so they can either buy a ticket and board your positive train, OR, they can stand on the platform alone. Sending you positive thoughts and best wishes, Donna & Mike
dlentz30 Message
16 Apr 2014, 05:45 PM

I was 23 when it started and now I am 28. I think abut death all the time. I was in the military and now I don't do a damn thing.
Arod Message
16 Apr 2014, 07:55 PM

A positive attitude is everything. I played sports all my life, have always been very active. This disease really tries to beat you down. Stay positive, and keep moving.
mgiuseff Message
18 Apr 2014, 06:03 PM

Hello friends, I did retire to North Georgia. It's beautiful there, and hot weather is coming. Time for some golf. I still walk okay. Use to trip quite a bit, but have been keeping upright. My older brother died from AMN at age 67. Mom had the illness, but didn't know it. She lost use of her legs by age 86 and passed at 88. We were all tested when my older brother died, and brother Jerry and I were positive for crazy levels of VLCFA. My younger brothers do not have the illness. Thank goodness. One brother is a general surgeon and the other is a surveyor in California. Am glad they are healthy. I rest most of the time (all the time), and enjoy nature. My wife's still looking for work, but I'm coasting. I have another business I'm trying to get off the ground, and will be soon doing that. Hope they get off the dime and give us some positive feedback about pigliatizone. If it is promising, we should all be on that medication. My legs are weak, that is my primary complaint. As long as I can play golf, I have to consider myself OK. This illness affects people differently, so take every day as a gift. We shall survive. Have a good day, Mark Giuseffi