Question for the ladies

[Equinney]

At what age did you start noticing symptoms? Asking for my daughter who is 17. She is going to her first neurologist appointment today at the request of my neurologist. Hoping to just get a baseline for her.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Equinney

Actually, there is a poll to address this very question. Just look under "Polls". When I last checked there were 45 respondents. Any new ladies: please feel free to vote on the poll also.

And there is a separate one for men.

Cheers

Chris

[Equinney in reply to COwithAMN]

Have only used the mobile version. Did not know that existed. Thank you Chris!

[Cherie]

Hi Equinney. I first noticed symptoms when I was 38 although being the first in my family I didn't realise what was happening with my balance and clumsiness when running. I also had a swollen ankle which has gone on to cause me problems with walking. My eldest daughter who is 33 and a carrier has no symptoms.

[Aaron98]

Hello Equinney. I'm not a female, but I have an extensive family history of AMN, and have a mother, a sister, and two aunts with the gene mutation (also my toddler daughter).

My mother and her two sisters all started exhibiting minor symptoms in their late forties to early fifties. Mostly balance issues, leg spasms (perhaps better termed myoclonic jerks), and bowel issues. My mother is 61 years old, and her bowel issues have become much worse just in the last couple of years.

My sister is 30 years old, and has no symptoms to date. I hope this helps!

[monmon]

Hello! I started in my early 40s (tripping, poor balance, legs stiffness). My mum was in her mid 50s, my granny (where the mutation started) late 70s.

Unfortunately this progressively earlier onset with younger generations is quite common. Best is luck!

[nan17]

Hi, My symptoms started at a noticeable level in my early 60s. My daughter has symptoms in her early 40s. Best wishes.

[Klorda]

I am 57 years old and first start noticing symptoms at age 50. I started tripping and falling more often (although I would run outside quite a bit and always thought I tripped over debris or something). Now I realize I was shuffling my feet and not picking them up properly. A couple of years ago, I would go to an amusement park or an outdoor outing and feel like "my legs just wouldn't work" (move forward) without an effort which caused fatigue. I attributed it to getting older. When my older sister (age 57 at the time) began walking just like my father and my nephew (age 26 at the time) started having bladder and sexual issues, she started researching and found out that we had inherited AMN from our father. We always thought he had MS.

[SusanBr]

Hi, I was always labelled clumsy as a child and carried on throughout adulthood. Started having bowel problems in my 40’s then hit 50 and trips and falls became worse with me breaking both ankles, both wrists, hip and dislocated an ankle and shoulder. Further fractures followed and went from one stick to crutches to walker. Cannot be trusted to walk far with crutches as cannot afford anymore falls lol!! Costing the NHS a lot of money ha!

Diagnosis at an early age is essential but you cannot put all symptoms down to AMN, need to keep an open mind.

Hope your daughter gets on ok, stay positive and hope good Neuro x

[Hillary]

Hi, I also was very clumsy as a child and had no balance at all. Could not ride a bicycle or use roller skates/ice skates unlike my sister. First noticed problems walking in my late 20s early 30s. Developed bladder issues when 35 but put this down to having given birth to my second child. Was diagnosed when my son was diagnosed with ALD age 41. Now 62 and have severe mobility problems. My daughter is a carrier aged 35, she does not have symptoms and has had a daughter of her own through PGD

[julie_ in reply to Hillary]

Oh that's interesting about riding a bike! I'm in my 50s and have never been able to learn! However, I could roller skate and ice skate - though not now!

[Sue95]

Hi, I first noticed symptoms in my late forties - inability to run or jump and loss of sensation in my feet. I'm now 60 and progression has been fairly slow. I trip and have bladder issues, plus further loss of sensation in my lower legs. I'm a bit worse than my mother but nowhere near as bad as my grandmother. They were undiagnosed but in retrospect were obviously affected.

[spalding]

Hi my symptoms started in my late fifties I was diagnosed 5 years ago but when I think about it I suffered with knee and leg weakness in my 10 years earlier but X-ray showed nothing wrong with my knees I am 62 year old female I have 2 sisters and 4 brothers they do not have this horrible disease both my parents were tested and did not have it either so I don’t know where it came from I have 2 sons and 3 daughters who were all tested my eldest daughter is a carrier and has passed it to her 3 sons 2 have had bone marrow transplants and are doing well her eldest son cannot have transplant but he is still mobile and his MRI show no changes at the moment which is good hope all is good for your daughter

[COwithAMN Administrator AMN EASIER Volunteer]

Thanks for all these helpful responses to Equinney's question. Can I please mention again the poll? The more ladies that complete the poll, the more representative the poll results will be.

I continue to hope that the medical profession will take more notice of our poll results. In the absence of anything else, they are a reasonable piece of information for clinicians to have.

[taylorkane]

Hi everyone! I'm new to this thread. I'm a 20 y/o "carrier" and have not yet experienced symptoms but very worried about developing them, especially seeing that there are many carriers who begin getting symptoms in their 20s.

[Equinney]

Thank you all for the responses. I have been letting my daughter, Anastasia, read all your responses. Her neuro appointment went well, they want to go ahead and MRI her whole spine and brain just to rule out anything and give us the disc for the future for any comparisons if needed. Her doctor is being very proactive in early detection of anything.

[taylorkane in reply to Equinney]

Hi! I'm also a young carrier (20 y/o) and have known I was a carrier throughout all of my teenage years. For a long time, I was the youngest carrier I knew of, which was extremely isolating for me. Please let Anastasia she is not alone, and if she is interested here is a video some young carriers of ALD created a few years ago: youtube.com/watch?v=esPD6zI...(Not working as expected?)

[Equinney in reply to taylorkane]

Taylorkane I wish there was a love button. I will have her watch the video when she gets home. Thank you for sharing this!! I knew it effected young women, but not to the extent that it does emotionally. And btw, I did cry through a good bit of it.

[fordsofdagenham]

I started symptoms after birth of first child at 29, thought it was because of having a baby. Am 73 now. Exercised since started symptoms. Now extra problems because of age related problems. I wasn't diagnosed until I was 50. I have 2 daughters, both carriers, youngest daughter 43 just started symptoms. Good luck to you and your daughter x

[Rebel64]

I started having symptoms just after age 40 although as a few other ladies have mentioned, I was always clumsy. Started with tripping with feet “catching”. I always put it off to the surfaces I was on rather than to me. My son was diagnosed just over age 30 and I knew at the time he got it from me as I had painful myoclonic jerking after a knee replacement in 2017. For years I had leg weakness, numbness and atrophy after too many falls to mention and after a devastating knee injury and rotator cuff tear from 2 more serious falls. I have experienced increasing issues with embarrassing bowel incontinence with absolutely no warning and less frequent bladder urgency in the last 2 or so years. I am 54 now. I have one daughter who did not inherit the mutation and my other daughter is awaiting her test results. All the best to all you ladies young and old! My heart goes out specifically to your daughter Equinney and any other young women facing this diagnosis (my 7-year-old granddaughter is an obligate carrier) as I might have lost my mind and it would have changed everything had I known back then. My oldest daughter has said she is glad I didn’t know until my children were all born and grown up so she has her brother and sister. Hard stuff to face so young.... ❤️

[Rosita5]

I am 28 years old. At the beginning of this year, 2019, I had a very stressful time adjusting to the new reality that my son was going to be on oral steroids. I was very stressed out, and about a month later I started having muscles spasms all over my body (I think this is myoclonus). I have them on my legs, arms, face, and core.

I’m set to see a neurologist (although not a specialist yet) to see if this is AMN related and to rule out any other disease.