Neuropathy or AMN?

[Klorda]

I always thought my father had MS. We now know he must've had AMN. He died 40 years ago. My sister walks just like he did and my nephew is exhibitiing the same symptoms. I have neuropathy in my legs and people are always telling me that I'm limping. Is the limping from neuropathy or AMN?

[COwithAMN Administrator AMN EASIER Volunteer]

You need to see a qualified neurologist as soon as possible and have the tests performed that will confirm AMN. No-one here on this site can tell you definitely what your symptoms mean. If you do have AMN, it would have come from your mother, not your father (I am assuming you are male).

By the way, AMN is a form of neuropathy (it's in the name).

Chris

[Klorda in reply to COwithAMN]

No, I am a female and my father passed it on to my sister and I. I have been to a university hospital which confirmed the diagnosis. I have only experienced neuropathy in my legs and clumsiness within the past year. Just wondered what I have to expect in the future.

[DianeinCape in reply to Klorda]

I am a female with symptoms of AMN. I have 4 sisters and we all have symptoms which seem to vary, none of us have exactly the same. Two have difficulty walking and use a cane. All of us experience legs jumping at night while asleep. Some have bladder incontinence. I have neuropathy in feet and lower legs and that started when I was about 50. I also have pain all over my body. My doctor said to be aware that swallowing can become an issue and to be careful of this. He also recommended getting a Flu vaccine each year because getting the flu can be very risky for people with AMN. I also have a low functioning Adrenal gland. I fainted first thing in the morning earlier this year, fell and got injured, woke up in convulsions. That was scary!

My dad was diagnosed with MS, the same as you said for your dad. He died at the age of 49 in 1980, not knowing that he had this disease. The diagnosis came a few years later when my nephew started having problems at the age of 8. He died at the age of 12.

[Aaron98 in reply to DianeinCape]

Hi Diane,

I am so sorry to hear about your challenging symptoms, and about the deaths of the your father and nephew from AMN/ALD. If this isn't too personal a question, I wanted to ask, did your father develop adult cerebral ALD? 49 seems fairly young for a man to pass away from AMN. I sincerely hope that this question does not seem insensitive.

Thanks,

Aaron

[Klorda in reply to Aaron98]

My father died at age 51 from AMN. He lost the use of his legs, bowels, and mind. It was tragic to see.

[Aaron98 in reply to Klorda]

Hi Klorda,

Was you father only ever diagnosed with "pure AMN", or was he eventually found to have developed adult cerebral ALD? There simply isn't enough research on the cognitive effects in men with "pure AMN". My grandfather passed away at 67 due to complications stemming from AMN, but I'm not sure that he ever had adult cerebral ALD.

I have seen many people on other sites posting about their husbands or brothers passing from AMN at 35, 45, or 55 years of age. This seems very young to have resulted from "pure AMN". An ALD/AMN expert I have consulted with told me that men who die at these ages had likely all developed adult cerebral ALD. I'm really not sure what to think about this.

[Klorda in reply to Aaron98]

My father was never really diagnosed with AMN or ALD. He died in 1977 and there wasn't much known about the disease then. A doctor told him he had MS and "would be in a wheelchair one day". He died of pneumonia from being bedridden. I remember his cognitive abilities were quite obviously affected. He regressed to having the mind of a 2 year-old and could barely speak or eat. It was tragic to watch at my age (12 years old). I am now 56 years old and stumble around and limp all the time. My legs are constantly burning. Gabapentin doesn't help. The only relief I seem to get is by exercising---which I am addicted to---so not being able to move frightens me.

[DianeinCape in reply to Aaron98]

Hi Aaron,

I assume my dad had cerebral involvement, but he was never diagnosed correctly. His health deteriorated quickly over a period of 9 months or so. The doctors never gave us a reason. That was in 1980.

I don't have internet access at home right now so I may not be able to respond right away.

Diane

[Klorda in reply to DianeinCape]

My symptoms started around age 50 also. I now have neuropathy in my lower body and fatigue. Do you anticipate ever using a wheelchair? That's my biggest fear---becoming incapacitated.

[DianeinCape in reply to Klorda]

Hi,

I really don't know what to say about where these symptoms will take me. I can walk but my leg muscles get very tight and this causes pain. So I don't walk very far. I used to walk 3 miles for exercise at a local park, I was doing that daily. But now I worry about walking a few blocks, I worry about falling and I don't want to increase the pain level that I am in.

My sister has a lot of trouble walking, much more than me. Her legs are very stiff and she walks with a cane. She still goes up and down stairs at her house but I am worried that she could fall and really hurt herself.

There are 5 female siblings in my family, no males. We are all having symptoms of AMN but each of us experience it differently. I think it's good that you are exercising, keep doing that for as long as you can.

Wishing you all the best.

Diane

[wilburlois15]

I have been diagnosed with AMN and my only symptom is neuropathy. Neuropathy or peripheral neuropathy has a wide variety of expressions, most commonly difficulty walking and bladder problems.

But yes, you definitely need to see a neurologist for a VLCFA blood test and/or genetic test to get confirmation.

[monkeybus]

For years, apart from fatigue (which I didn't even know I had), neuropathy was my sole symptom. I didn't even know i was limping, others would point it out.

[Klorda in reply to monkeybus]

Yes, a lot of people comment that I am limping and it makes me feel very self-conscious. How long have you known about your diagnosis? Are you in a wheelchair?

[monkeybus]

I was diagnosed with AMN about three years ago, before that I was diagnosed with HSP.

I take 4-Aminopyridine (I've posted a lot about this on here before), doesn't cure my limp, but allows me to walk.

For long distances I use crutches. I am still mobile, still out and about. But, if I stop my medication the fatigue hits me like a ton of bricks. Hate that fatigue. I used to be self-conscious about my limping about, but let's face it, nobody cares. Whenever I am asked I just say I had an accident, no point telling everyone about an incurable metabolic disease.

I'd have to say your limping is spasticity, but the only way to know for sure is to go and have all the tests done. Your symptoms can be treated.

[Klorda]

Thank you!!