My brother has ALD , he is 26 and doing ok considering it all he suffers with sight problems , Addison and lots of fatigue and decreased function as a person overall , but is he and will always be him and his personality is still very strong , I have helped my dad with caring for him since a very young age , and caring is my life , but I’m at the point where I am now thinking I need some help .
I’m a Woman, I’m 20 years old , I live alone and work alot, and it’s something that’s been coming for a long time but hit me like a bombshell, I finally got the bloods taken for it and signed the million consent forms and I’m waiting on results from genetic testing to see if I carry the gene, when being looked at by a doctor recently he felt I’m showing signs of deterioration in my nerves and reflexes in my legs, I also have a lot of constant pain in them but I’ve grown used to this. he said this would indicate something going on , so waiting on results but it’s seeming likely to be AMN (due to family likelihood we are testing for this first )
I currently work full time in a dementia care home as a senior carer I have done so since about 15 years old working up from a junior . I’m finding nowadays I struggle a lot with my longer shifts and I’m so exhausted on my days of that I often stay in bed the whole day , I don’t know exactly what I’m making this post for but , I’m looking for support and I guess advice or people in a similar place to help me though this I get I’m young but I have been through more things in life the people twice my age have , I’m often mistaken for a 25/30 year old because of how I act/respond to things
Some extra information would be that we know The gene has come from my mothers side and she suffered badly with AMN with her mobility being bad and having bowl and bladder problems .
So any advice or things to look out for , any recommendations to slow what is happening or to help with the pain , anything is appreciated
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TiaPhipps
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Thankyou for the kind words , I was worried no one would reply anything and Absolutely , I live in the UK , well England , and I’m being seen by doctors in Oxford for a more exact area but still nowhere near my actual address to be safe.
Hi Tia, I'm thinking of you and your brother. Although, I live across the pond, I'm familiar with Alex TLC in the UK and have copied some information from their website:
Alex TLC is Britain’s leading charity for ALD and AMN. It is run by people who have been personally affected by these conditions, either themselves or in their families, and are here to help you. Alex TLC provides practical, emotional and financial support for all those affected by ALD and AMN. We also have a worldwide contact list of people who are willing to chat about all aspects of living with AMN.
To get in touch please contact Alex, The Leukodystrophy Charity (Alex TLC) on 020 7701 4388 or email info@alextlc.org. Or visit our website at alextlc.org.
Support is crucial when battling this disease and I have been inspired and helped by this site alone. Regarding your brother's eye sight, does he have adult cerebral ALD? I only ask because over a year ago, I was diagnosed with adult cerebral ALD and eye sight can be a problem. Please continue to ask any questions and know we care and that we get you. Please stay.
Yeah we are familiar with the Alex charity , we were friends with alexes family accualy and my dad and brother have been on holiday many times with them for what they call the ALD weekend , and yes I believe this is part of it although he was diagnosed at 14 , so it may be different .
Personaly I’m just looking for preventative and coping from the affects it seemes to be having on me and any recommendations from others in a similar place , Thank-you for your response it makes me feel very listened too and seen
Hello there. I just want to let you know you are not alone. I was somewhat older (in my 30s) when I first noticed symptoms but was misdiagnosed for years (no family history due to adoption) so I was completely blindsided by it all. You sound like a very strong and determined person…but we all need some support sometimes. I don’t know if you are on Facebook but there are a couple groups where you can find a lot of women I’m similar situations. “Females with ALD” and “Remember the Girls” are both great pages. Sending you a virtual hug.
Hi Tia, I’m a bereaved mum and also a manifesting carrier. Im 65 so lots older than you but always here if you have any questions. I have a daughter who is also a carrier of the gene. I now have a granddaughter who has no trace of ALD as she was born via PGD, a form of IVF where they test the embryos prior to implantation. We live in UK, South Wales. You are never alone, no matter how odd your questions we will answer them or laugh with you xx
Thankyou so much , that’s very kind of you. I’ve very interested in how having children will work if I’m a carrier as I’ve always dreamed of having children , so I’m assuming IVF and testing would be the way forward I would like to hear more about this process and was it through NHS or did you need to fund it privately ?
I feel much less alone from how many responses I’ve been having , I’m sure I will have many questions that will done
At the moment my biggest concerns are around money and working and I’m stressing over many things , working is my life and I’m struggaling with accepting I need to slow down a bit . But the pain is bad and knocks me for days when I overdo myself . One of those things I need to find a balance I think
Hi Tia, oh my gosh I can completely relate. I'm 22 and I'm consistently told I seem a lot older than my age, which I know is because difficult circumstances have matured me. My Uncle and Dad both died from ALD, and I grew up with my Dad having AMN that consistently deteriorated from when I was born until he died. I'm also a carrier and I'm convinced that I'm getting symptoms too, but a lot of people like to point out that it could be due to many other factors (which it could, so it's hard to diagnose). I get twitchy legs, especially when stressed, I'm constantly exhausted and find it hard to get through the day and my legs ache a lot after not much movement or just randomly. I've been getting lots of these symptoms since about 14 years old, but they got worse last year. I hope you're okay and if you'd like to talk more just drop me a message on here and I'll send my email or socials x
Hi TiaI have met you and your family at the ald weekends. I will be glad when they are able to return so to catch up with everyone.
I am 62 and started having balance problems when I was 38. I was misdiagnosed for 3 years and then it was found by a doctor at Oxford as I am a de novo. Both of my daughters were then checked at Oxford.
One of my daughters,Nicola who has come with me to the meetings, is not a carrier and my other daughter lives in Australia and is trying pgd out there.
I have a lot of back pain and now walk with a walker. I also have Addisons (diagnosed by an Oxford endo) which is rare but perhaps you should be checked as you have so much fatigue.
I take gabapentin at night for spasms as I don't like the side effects during the day, Naproxen during the day for pain or Tramadol if I really have to. And sometimes cbd oil, and an acupuncturist can help.
I would be interested to know which doctor you will be seeing at Oxford. You are welcome to privately message me.
There are Facebook groups that can also help and I think there is one for young amners.
Hiya, I’m sure I’ve heard of u before , unfortunately I don’t remeber meeting u I was most likely too young, I hope soo to dad and max would kill for a ALD weekend getaway lol, The doctor I saw was Dr U Kini , he was a young ish (for a doctor ) looking man very nice. He suggested I see an endo (waiting on the letter I’m from that referral) also he suggested an mri as well. And I’m still waiting on the blood results but I was warned can take up to THREE MONTHS...
I'm currently on no medications for my pain or general discomfort
Only medication I have in general is to do with my mental health and a possible stomach ulcer, otherwise I am/was overall healthy
Thank you for all the kind words I hope I get to meet you in person properly one day now I'm old enough to understand
You are much better off find out sooner, rather than later.
The treatments that claim to retard the progression of the disease all stress this. Whether it be antioxidant treatment, MIN-102 or even Lorenzo's Oil.
Find out in your 40's+ like a good few of us, and you are only looking at palliative care.
I look back, and I plainly had a few symptoms in my 20's that I considered odd, and I did mention a few things to a doctor when I was 21, he just told me told take some exercise. I wish I'd found out back then, but there was no Internet, and I doubt my GP in London would know what to do. It would have been a long, slow grind through the NHS that likely wouldn't bear much fruit.
Now is far better time, if you can access the necessary treatment.
Thank you for your reply, I have been fighting for someone to help/ look at me since I was 17/18 as this is when I noticed problems that I remember my mum having (she is not in my life anymore) and only now at almost 21 and things have definitely become a bit worse is anyone listening to me, It took me contacting my brothers Dr, Dr Lackman up in London via my NHS email I have from my job. To get advice / his push for a refuel without him I would probably still be, being ignored basically
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