Stiffness in legs

[Slgrooms]

I am a female carrier of AMN. I am 42 years old and I exercise 5 days a week. Lately, I have been noticing a little more stiffness in my legs after working out, after sitting for longer lengths of time, and sometimes if I get up in the middle of the night. It goes away fairly quickly, but I have definitely noticed more lately. I was wondering if this is the first sign of symptoms with this? My father has passed away, so unfortunately I can no longer ask him. Plus, I realize symptoms in women are different than in males. If anyone has any input, I would really appreciate it. Thanks!

[daviddmarsh]

I'm a male, and in my family men show signs in 30's or so, females in 60's or later. So there's that, but for me the first signs were slight trips b/c didn't pick up feet enough, and would trip over slight breaks in sidewalk, couldn't run as fast or maneuver with same agility. Stiffness was much later.

[AussieBob]

Are you in the US

[Slgrooms in reply to AussieBob]

Yes! NY state

[Shelcee]

Hi there, I am also a female carrier and now am 46. I am sorry to say your symptoms sound exactly as mine were around my early forties. I was exercising regularly, had a good diet but started exhibiting stiffness, tripping, finding it harder to get up after sitting etc. not long after

However we are all different and experience symptoms at different rates, my mother is also a carrier and is 76 and she’s still getting around on her own two feet despite her symptoms. You just have to keep on moving.

[Slgrooms in reply to Shelcee]

Thanks for your reply and I will definitely take your advice!

[KazzyALD]

Hiya, I was in my late 30’s when I was told I had mild nerve damage in my legs. I was still ok walking though. I’m 49 now, and yes, I’m going through the same that you have described. Like it’s been mentioned though, we are all different, and I think my symptoms aren’t all ALD/AMN, as I also suffer with Rheumatoid Arthritis.

[monkeybus]

Fatigue was my first sign, then changes in my gait, then nighttime spasms.

But yes. Stiiff legs. Could be spasticity. Any doctor can perform the test. I forget what it is called..

[Slgrooms in reply to monkeybus]

I see my dad’s neurologist, who is now mine, every year now.

[Slgrooms]

Thank you, everyone! I had a feeling.

[julie_]

My first signs were tripping and falling. My physio told me it was because my calves were so tight, I could not pick up my feet. The other sign was my walking pace had slowed down so much, it felt as if I were walking in pea soup. However, neither of these signs were consistent, just one offs. It was only later in the year that I began having spasms like my brother and we were both diagnosed at the same time in 2011. I was 47.

I continued working out but now, 6.5 years later, I feel the stiffness you are feeling, but it does not go away quickly anymore. Everything now takes more time and effort to get done. In my mind, it is increased spasticity. I don't like the idea of increasing my medication.

[Slgrooms in reply to julie_]

Thank you for sharing this with me.

[Klorda]

I am 57 years old and started feeling like my legs wouldn't work a couple of years ago. I always thought that I was overdoing exercise (running, biking) which made my legs hurt or feel clumsy/wobbly. Now I have been diagnosed with AMN (my older sister has it but my TWIN sister does not!). I have constant neuropathy from my waist down and leg weakness and fatigue. Some days or worse than others. I don't take any medication. Exercise seems to make me feel better and make my legs work better. The pain is manageable. Hopefully, I won't progress too much further (who knows??) My father died at age 51. We always thought he had MS but I remember noticing his cognitive abilities seemed severe more than the average MS patient. Now we know.

[Aaron98 in reply to Klorda]

Hello, Klorda. Thank you for sharing your experiences. I apologize if this is difficult to talk about (and I totally respect it if you do not wish to answer), but did your father develop adult cerebral adrenoleukodystrophy? If not, what led to his death? 51 seems quite young, even for a man with AMN. I hope to gain an understanding of how AMN can affect middle aged/older men.

[Klorda in reply to Aaron98]

My dad died in 1977--a long time ago and the medical community probably didn't even know what AMN was. I do not know any members of my father's family so it is hard to detect exactly if his mother passed it to him. My dad always walked funny and my mother told us it was from a war injury which we all believed. He always seemed to have problems with his bladder and was incontinent. He never seemed to gain weight and ate like a horse. He became disabled so my mother took care of him at home. We were 12 years old at the time so we really didn't know much about medical issues. He seemed to lose the ability to walk, speak, hold a cigarette, and he would always laugh or cry or make strange sounds at inappropriate times. He developed bed sores due to being bedridden and had to be hospitalized. He then developed pneumonia and died at age 51. It was tough to witness.

[Aaron98 in reply to Klorda]

I lost a second-cousin to childhood cerebral ALD, and my grandfather and great-uncle to AMN. I'm so sorry for your loss.

[Rebel64 in reply to Klorda]

Oh Klorda! Thank you for sharing such a personal story! That must have been so hugely difficult to experience and watch your father (and you all) suffer so much and pass at such a young age!

[Klorda in reply to Rebel64]

Yes, it was difficult and being so young, we really never knew how to process it. We struggled emotionally and financially for years after.

[Rebel64 in reply to Klorda]

I can only imagine...

[Slgrooms in reply to Klorda]

I am so sorry!

[tieaknot]

Hi. I am a 43 year old female and that sounds similar to me but like some others I first noticed problems with my coordination when trying to jog/run. Then came the neuropathy and stiffness and pain. Stretching A LOT and frequently is necessary for me. I am a believer in continuing exercise at whatever level a person can, to try to maintain muscle mass and nerve stimulation and possibly slow the decline. Even if it doesn’t work, I feel like I’m trying something! Wishing you the best.

[Slgrooms in reply to tieaknot]

Thanks, you too!!

[Klorda]

Yes, I always seemed to have balance, clumsiness issues, and everyone would tell me to "pick up your feet and quit shuffling". I even had a vertigo test, MRI, etc. Now I know--AMN. Like you, I try to keep moving and keep my muscles and nerves stimulated. They say if you don't use it, you lose it. I definitely believe that.