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KimberlyClaraNicole Message
20 Feb 2013, 05:58 PM

Hi. I'm not really sure how this website works yet, but it said I should introduce myself. My name is Kimberly and I'm 18 years old. I was diagnosed with AMN when I was 15. I was tested that young because my mother and great grandmother have it. My older brother passed away from ALD. My grandfather and his two brothers also had it. It's a high risk in my family so my mother wanted to know early on whether or not I had it. Luckily my little brother is perfectly healthy. I haven't had very many symptoms yet, but the ones i do have are painful. My muscles are tighter than they should be at my age and I have uncontrollable twitching in my right leg. I don't really know what to expect for my future, but I'm not going to let this disease control my life. I'm really glad I found a website where I can converse with other people who share my problems. Its nice to meet you all.
easygoin1 Message
20 Feb 2013, 07:31 PM

Welcome Kimberly! I hope you can find support and help on this site to deal with the challenges that this disease hands us! Best wishes and blessings, Jeff
Arod Message
22 Feb 2013, 01:46 AM

Welcome Kimberly. You already have in my opinion one of the most important thing for us to deal with this disease of ours. "You will not let it control or difine you" Stay active & positive.
Anthony90 Message
22 Feb 2013, 08:56 PM

Hello Kimberly! I am Anthony, obviously lol. I am 23 and i was diagnosed at 5, due to family conditions. i started walking a little differently at the age of 20, and i now use the assistance of forearm crutches and a wheelchair long distance. I like your attitude! It will get you far. I am curious, my understanding was females do not get symptoms until later, older age? if you'd like you can email me directly if you do not feel comfortable talking about it socially; anyway, welcome, i hope it helps! feel free to ask any questions. Anthony
SallyBuckner Message
23 Feb 2013, 09:23 PM

Welcome, Kimberly, I am a woman w/ AMN, and don't let professional descriptions that say women are "carriers" w/o serious symptoms fool you. My sister at 76 has been wheelchair bound for at least a dozen years; I have been mainly in a wheelchair for 3 years--use a walker for short distances, but because the situation is complicated w/ scoliosis, I have poor balance. I, too, have the jumping legs at night. For years I was able to control it by drinking a small glass of diet tonic water when they jumped. More recently that stopped working, so my dr. put me on ReQuip (which is used for restless-leg syndrome) and it works wonderfully--only I tend to be sleepy the next morning. I also have used physical therapy to strengthen my legs. . . Good luck. You have an excellent attitude.
KimberlyClaraNicole Message
25 Feb 2013, 02:53 PM

It is true that in most cases women don't start experiencing symptoms until at least their late 20's. For some reason I've had symptoms in my legs for a few years now. The doctors in Baltimore said that the gene that runs in my family is unpredictable. My grandfather and his two brothers each had the adult form of ALD, however my big brother somehow ended up with the childhood form and he died at age 8. They don't think I will develop anymore symptoms for quite a few years thankfully. So for now I just have to learn how to deal with the muscle cramps and twitching. Thank you all for being so welcoming!
Anthony90 Message
25 Feb 2013, 05:10 PM

Drink lots of water and stay hydrated! helps. make sure legs and feet at night are warm. keep the circulation going as much as possible..