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females with AMN

5469keener Message
23 Sep 2012, 01:43 AM

Are there other women on here with AMN?
stevensims Message
15 Oct 2012, 05:07 PM

Hi there are a lot of women with AMN on: Best wishes Steve
5469keener Message
25 Nov 2012, 04:12 AM

Thank you
DCooper Message
25 Nov 2012, 06:33 AM

Hello, I am a female with AMN who has had symptoms for ~ 25 years. Debbie
wardjdnhbba Message
1 Dec 2012, 03:31 PM

Hello Debbie, My name is also Debbie, I do not have AMN, however, my husband does. I have 4 girls and I was just wandered if you would mind sharing the symptoms that you have? My girls are twins 18, 22 & 12. I don't think that they have experienced any thing yet, but it would be nice to know what they might expect. If you feel more comfortable to just e-mail me you can do so at If not, I understand also.
MissSheryl Message
5 Jan 2013, 01:10 AM

Hi All, I just joined and am female. See my profile for info on my condition. Sheryl
SallyBuckner Message
5 Jan 2013, 04:00 PM

I have AMN, diagnosed in 1986, but symptomatic (walking affected) since about 1970. My mobility worsened with development of scoliosis, which seriously affects balance. At this point I use a power chair for most transportation (and a ramp-van), but can use a walker for short excusions; I live in a retirement community and can walk to the dining hall, for example. I have trouble with legs jumping at night;tonic water (which contains quinine) is helpful, sometimes supplemented by 2 mg. of diazepam.
srouse Message
29 Jan 2013, 08:04 AM

I am a 42 yr old female with AMN and Addison's diagnosed in 2010. I have severe spasticity that requires meds every 4 hours, but am still able to walk. My heart muscles seem to have become affected today with spasms. Has anyone else experienced this?
SallyBuckner Message
29 Jan 2013, 01:35 PM

No heart problems. General health is excellent for someone in her 80s--but as noted above, mobility is severely affected. By the way, I finally went on Requip (usually prescribed for restless legs syndrome or Parkinson's). Works fine, but makes me sleepier than usual.
MissSheryl Message
29 Jan 2013, 10:27 PM

Does anyone in the group have kidney problems associated with AMN. I was diagnosed with AMN in 98 but have had symptoms since the early 90s. I have severe leg pain, spasms and clonus getting progressively worse. I am in a wheelchair most of the time now, but can walk short distances with a walker. Last Feb, I was diagnosed with end stage renal failure. I am on dialysis now. Does anyone know of a link between AMN and kidney disease? Sheryl
SallyBuckner Message
29 Jan 2013, 10:33 PM

I haven't heard about kidney problems, and neither I, my father, my sister, nor my sons have had any. Bladder, yes, kidney, no. i'm so sorry about your pain and the renal failure. My elder son had severe pain, too. I haven't.
srouse Message
30 Jan 2013, 07:07 AM

Sheryl, I had severe pain that would make walking impossible until my neuro began to treat the spasms and pain aggressively with medications 6 times per day. I only weigh 112 and take 5 mg Baclofen, 3 times a day; 2 mg Zanaflex 3 times a day and then 4 mg at midnight to make it through the night without spasms; 5 mg Valium 4 times per day and increase this to 10 mg if I have a severe cramp situation where my legs or feet are visiblly splaying and I cannot walk. Also, I take 50 mg of Savella twice a day. I use narcotics only when pain is unbearable or I need to walk around for an extended period of time, cleaning house, shopping at the mall, etc. In addition to these meds, I have to take many others because I am one of the few females with Addison's disease caused by AMN. I never consumed caffeine prior to my diagnosis over 2 years ago, but now purposely drink it twice a day to combat the drowisness caused by these meds. The key for me has been to keep up with dosages and take them prior to when the pain and spasms begin. Also, massage has helped.
stevensims Message
30 Jan 2013, 12:25 PM

Hi Sheryl, Sorry to hear about your kidneys, this is caused because of high back pressures when the bladder is spasming, I need to chatheretise to release the pressure in my bladder as I was told if I didn't I would get renal failure. Best wishes Steve
Arod Message
31 Jan 2013, 01:25 AM

Hello Srouse, I am a male with Addison, and Adrenomyeloneuropathy. I take 5mg of Prednisone and 0.1 mg of Fludrocort once a day, and I've been dealing with the effects of this condition for 15 years now. I've also been taking Vitamin D & calcium for about 7 years now. I'm wondering what you are taking for Addison & wonder if what I'm taking may be useful to you since I am not experiencing the side effects you are. If you are intersted in communicating with me my email is Sincerely Apollo
srouse Message
31 Jan 2013, 05:25 AM

For Addison's I take 10mg hydrocortisone am & 5mg again at 2pm. My dr at Mayo said not to take prednisone for Addison's. My heart races with prednisone. I take .05 fludrocortisone am & pm & consume high salt, take prescription potassium, Celebrex due to traumatic injury of knee that still swells & hurts post surgery, calcium, vit D. Also, Metanx, a prescription B vit for neuropathy that got me off neurontin years ago. My blood pressure is very low & heart rate resting is 200 without 5mg Bystolic. Have you had any heart related issues?
Arod Message
1 Feb 2013, 01:40 PM

KimberlyClaraNicole Message
6 Feb 2013, 08:29 PM

Hello. My name is Kimberly. I'm a female with AMN. I'm 18 and found out i had it 3 years ago. My mother has it. My older brother died from ALD. So did my grandfather and his two brothers. It goes back along time in my family history. I'm new to the site. So far I have not had many symptoms, but the ones I do have are painful. I have muscle tightening and severe twitching in one of my legs. The twitching gets so bad sometimes that it keeps me up at night. It doesn't happen all the time, but enough that it really bothers me. My legs are not as strong as they should be for my age, but not to the point where it is a problem yet. I know the symptoms will grow worse as I age. I'm not really sure what all will happen to me though.
SallyBuckner Message
7 Feb 2013, 03:14 AM

My legs were jumping at night. I tried tonic water successfully; now I use ReQuip (designed for restless leg syndrome, but it helps me--haven't had a single bad night since I began, but it does make me sleepy for a good while the next morning).
dryder845 Message
23 Feb 2013, 02:14 PM

I am 48 years old and have AMN. I almost lost my 26 year old son last year because no one would listen to me about the disease. My father had died in 1995 with the disease. No one believed it was the disease except the doctor at Stony Brook that treated my father. After 30 days in hospital, they said that was the only answer. In Jan 2012 I finally found a doctor to listen. My son was in complete adrenal failure! With steriods, he is doing a lot better. My question is: are we all really that special? Or are there many other people who have no one to listen to them! I now have the opportunity to stop this disease in my family !
wardjdnhbba Message
23 Feb 2013, 02:49 PM

dryder 845, what do you mean you have the opportunity to stop this disease?
dryder845 Message
23 Feb 2013, 09:19 PM

I am stopping it in my family! this will not pass on again from our family. No more babies from our family with this disease.
MissSheryl Message
23 Feb 2013, 10:29 PM

Thank God you have taken this action. You are 100% correct, your family will stop the passing of this horrible condition to others. You have my thanks and respect. Without a cure, which is unlikely in the forseeable future, the only way of stopping this is to prevent the defect in another generation. We are doing the same in our family. God bless, Sheryl