Adrenomyeloneuropathy - does anyone have any info of specialists in the north west of the uk??

[vicarl]

my brother-inlaw has Adrenomyeloneuropathy and the doctors around here are not really treating him very well with this as we know his cousin who lives along way from us has this condition and he gets better treatment. we have read up on him being able to have bone marrow transplant and when my husband mentioned this to his brothers doctor they seemed reluctant to want to do this? we cant understand why when we know what the out come will be. we just want the best chance for him to survive! any help would be appriciated - thank - you in advance!

[GeoffMahy Volunteer]

Hello,

I am an AMN sufferer and I attend the annual weekend get together. The subject of bone marrow transplants is regularly discussed and was covered at our last meeting at the end of August. The advice is always that bone marrow transplants in adults have a high risk of failure and are not recommended. Even for children the success rate is uncertain.

I am not a doctor but that is what we are told and that will be the reason why the doctors your brother-in-law has seen don't want to consider it.

Unfortunately there is no simple answer.

Geoff Mahy

[vicarl]

Thank you for your reply its much appreciated! Do you live in the north? My husband was just asking about the annual get together you have?

[vicarl]

Wondering where it is. My brother in-law is really strugling to walk now and feels physically drained as well as having other problems. It would be nice to talk to others that know what your all going through.

Vicky

[StevenSims]

Hi,

Does your brother in law have cerebral involvement showing on his MRI scans? If he has I would get in contact with Dr John Snowden in Sheffield, a bone marrow transplant is a very risky procedure and can only be done if there is early cerebral changes showing with gadolinium enhancement on a MRI/mrs scans, how old is he and when was he diagnosed? There is a 40% chance of developing ALD.

Best wishes

Steve

[vicarl in reply to StevenSims]

Hi steve thanks for the reply! The gp says its got ald. When my husband took him to rochdale to see his consultant he asked for his brother to have an MRI scan to show the progression and his reply was there is not point.

He struggles to walk his legs are starting to bend (starting to drag his feet slightly like their heavy to lift) when my husband mentioned the specialist down london and asked if there was anyone up here he just said "well why dont you take him down there" so this is why we are doing what we can to find someone around here so we can get the scans done and get help for him, so I/we really appreciate your response! Thankyou

[vicarl in reply to StevenSims]

Hes just turned 35 found out around 10-11 yr ago he had the gene as family members where tested and probably started with it all around 5 yr ago cheers again vicky

[StevenSims]

Hi Vicky

I was diagnosed 4 years ago and I was told I had Ald,, I'm in South Wales and docs here don't know about ALD, it's not ALD until there is cerebral involvement, has he had a MRI this needs to be done every year. I would definatly get referred to another neurologist with some knowledge or get him to get in contact with someone who does, my neurologist gets advice from dr Steward in Bristol and he sends him my scans to look at as they don't have a clue in Cardiff! Also does he see a urologist as the bladder is a big problem for us? Mine is worse than others as there is high pressure causing kidney problems but is corrected by self catheterising.

All the best

Steve

[vicarl in reply to StevenSims]

Cheers steve,

He has meds for other problems and that affected his bladder and had now been sorted with other meds so we hoping its not got that far yet.

My husbands at the docs with him monday and is insisting he gets an mri scan hes noy had one for 3 to 4 years its ridiculous. We are so happy we have been able to get intouch with ppl on here as we are getting intouch with more ppl and getting more things done. Sara hunt has helped us also.

Thank you so much again steve we hope you keep well!

Csrl and vicky

[StevenSims in reply to vicarl]

Hi, I have dr snowdons email address on my other computer, ill send it to you, I emailed him about a adult with ALD he did a transplant on but he couldn't give me any details, he offered to reveiw me, perhaps you could get him to see your brother in law?

Steve

[vicarl in reply to StevenSims]

That would be great thanks!! I will give you my email to send it to thanks steve

Vicky

[Debi in reply to StevenSims]

we used to see Dr Steward in Bristol till my boys became adults...We also live in the North west, and they don't seem to care that much. We were told by my sons euro that there was no point in testing him further as the inevitable is going to happen regardless. Unfortunately Leon died 7 years ago, and Kie is practically wheelchair bound now. I have given up on specialists now and do my best I can for my son. He still sees his Neuro once a year but that is it.

[gemini2305 in reply to Debi]

Try salford nhs trust hospital Dr sharma of the department of metobolic disorders my brother has amn and goes there,hope they can help.

[JohnH]

Most AMN men have some cerebral involvement and any BM will rapidly increase that involvement. Using cerebral involvement as a guide post for a BM transplant in my opinion would be a mistake. I have never seen one done that I would call successful in a adult, all have greatly decreased the recipients way of life. The best chance of survival for AMN is to stay off of all prescriptions, since none of them treat the AMN just the symptoms with all giving many bad side effects that speed up the disease. In my opinion from years of talking to others with this illness I have found that most AMN suffers are their own worst enemy with what they eat and how they medicate. I have also found that a doctor who is slow to prescribe is a lot better than one that is fast to write. Time after time I have seen those with what seems to be better medical care progress much faster and die. My suggestion would be a very low fat diet( vegetarian if possible) exercise and keep active. Only go to doctors when it is really needed and only take prescription that treat or cure our illness, of which their are none right now. It is very important for the purpose of our bodies to fight the advancement of this illness that we keep our immune system strong. This means don't poison it with bad food ,heavy drinking or drugs but feed it what it needs and this will greatly slow the progression in my opinion.

That is a very quick summery of how I feel we must fight this illness until something better comes along.

All my best,

John

[GeoffMahy Volunteer in reply to JohnH]

Hi,

Sorry to be so slow replying. I live in Guernsey and also have a lack of contact with experts on AMN, apart from an annual appointment in London.

You have seen some other interesting answers. The location of the annual meeting varies. It always used to be in London, but in May 2012 was at the Belfry near Birmingham and in August this year at Uckfield in East Sussex. It is not yet known where it will be next year. I suggest you contact Sara Hunt who runs the ALD Life charity and is the main organiser of the event. Sara's email address is [e-mail]

All the best, Geoff

[vicarl in reply to GeoffMahy]

Thanks for your reply Geoff! We have been intouch with sara thank you. Hope things are steady for you! Keep well vicky

[vicarl in reply to JohnH]

Thank you for your reply john,we understand a lot of what you have said as keeping healthy is something we have drilled into my brother in-law.we are touch with what we have been reading up on how people are living and helping to raise money to help research into this and hopefully one day someone will find a cure.

Hope you keep well vicky.

[gemini2305]

Thankyou to everyone for replying to my wife's post, for steven my brother his gp has made a appointment for the department of metabolic disorders at hope hospital in salford.Best wishes ......carl