Women-only: at what age did your symptoms first... - AMN EASIER
Women-only: at what age did your symptoms first become noticeable?
COwithAMNAdministratorAMN EASIERVolunteer61 Voters
I had an episode when I was 27 years old with dropped feet. Recovered over several months and was then symptom free until age 39 years.
Looking back I realize my symptoms started with bladder issues in my earlier 30s but it was blamed on having kids. My leg issues started right around 36.
In my early 30s I'd fall for no reason, nothing that caused concern as it happened so rarely. Real troubles started in my mid 40s when I couldn't turn around without falling! Drop-foot symptoms didn't alarm me until my late 40s. I'd had a Hip Replacement at 38 - all was well except the muscles around the hip never really responded afterwards. Of course, we all thought it was damage from the surgery ... now I know better!
I was having tripping and falling issues and then balance issues, all in my 40s. I realized later that I had other incidents in my 30s that were one-off but are likely AMN related.
I have always struggled with balance, but not as much falls. I started having night leg spasms in my mid thirties, by my early 50's I did start falling, having leg cramping and spasms all day. By mid 50's I had minimal feeling in my legs, that is when I sought medical attention and was given muscle relaxants and Pramipexole for the night leg spasms. I am still very stiff and have trouble walking, but the night leg spasms are gone! I am now 57 y.o. I lost a brother at age 42 from ADL.
I started with falling in my 50s, and then an awkward gait. People said I was limping. It took about 7 years to get an AMN diagnosis. It's been 10 years since the diagnosis, and I can't walk without holding on to something due to stiff legs and no balance. I use a walker all the time now.
Hi Nan, Glad you found this notes section. Sorry you are now walking with a walker - like me. What about a scooter? I used to live in Toronto - for five years, long ago. How are you finding the support? Have you found other ladies or gents with AMN there?
I noticed it maybe in my mid-to late 50's. I was always exercising and running outside. I started tripping over ANYTHING and just attributed it to being clumsy. Then people would tell me I was limping when I never felt like I was limping. My nephew was diagnosed about 4 years ago and through investgations and doctor's visits, that's how we realized what was going on. A family thing. We always thought our father had MS.
I developed symptoms after being given a steroid excess in France in 2001 for a calcification I developed from dehydrating during routine gut tests at age 44. I was left mentally stunned and physically sick, also losing balance, huge fatigue, for more than a year but it wasn't until 2006-7 that I was finally diagnosed with AMN/ALD. The doctors acknowledged the steroids had 'unearthed' the AMN/ALD.
I am told to consider myself intolerant of systemic steroids now, they will just accelerate the AMN which is unfortunate since I battle severe fatigue. Damaged adrenal glands. It was 5 years after first symptoms before I was diagnosed. This reaction to steroids is not often seen, mostly in Lupus patients, and in the US they said to now consider myself 'allergic' to steroids which few doctors understand.
For years I suffered seborrheic dermatitis of scalp and eyes, plus they say I have a very low grade staph infection there, inherited also from my dear dad. Ketaconazole helps but only a very long course of powerful antibiotics controlled the problem. Never heard of anyone with AMN/ALD with this so perhaps its just another unfortunate genetic thing. Lots of hair loss involved which is very depressing for a woman, and I know that can be part of AMN/ALD.
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