Want to know more about treatments for AMN

[Andrew-432]

I am a 55 year old man in Derbyshire with AMN and Addisons i would like to know what drugs can be taken to help with this condition, if other people near me are affected and how this affects others.

[monkeybus]

Hello Andrew-432 , it's shocking, the lack of effective treatments for our disease.

I don't have Addisons, but spasticity, spasms and fatigue. Throw in intermittent depression into the bargain.

Fatigue - Modafinil

Spasticity - 4-AP, Piracetam, Baclofen

Spasms - Gabapentin

Throw in some Valium for when things get bad. Forgot Sertraline for the depression, not bad for spasms and fatigue as well.

Been getting a lot of stomach spasms lately. Worrying.

What are your symptoms? What medicine are you currently taking? Have you found a decent neurologist?

[Andrew-432 in reply to monkeybus]

My symptoms are i have lower back pain i have had this for 3 years now my legs are very week poor balance constipated all the time and my bladder does not work correctly. I take oxybutynin for my bladder atorvastatin to bring my cholesterol down hydro-cortisone and fludrocortisone for the addisons i also have a permanent bladder infection and use different antibiotics for this i do not think i have a neurologist what do they do thanks for your answer.

[DennyB]

Hi Andrew, I'm 59 and have had Addison's since I was 13. I have had signs of AMN forthe last 20 years. I take Baclofen for AMN and Hydrocortisone and Fludrocortisone forthe Addison's. My Addison's is under control. There seems to be nothing to help the AMN. We need to be greatful that we only have AMN and not ALD. Enjoy life as much as you can, because you don't have to look far to see someone worse off than you.

[Andrew-432 in reply to DennyB]

My grandson has ALD they discovered it in him when he was 3 my daughter told the doctor about me and test were done i got it confirmed a year later in 2012 i was misdiagnosed for over 16 years with ms and hsp both close but at least it is now confirmed but i do worry about my grandson.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Andrew

Welcome to AMN Easier, it's good you have found this forum. Your AMN symptoms are not unusual. As you have found out, the most common problems we have to deal with are spasticity of the lower limbs, bladder and bowel problems, and adrenal insufficiency. Symptoms tend to progress at different rates for all of us.

It looks like you are getting most of the right treatments that can be helpful. Baclofen can help with the spasticity and night leg-spasms. And you need to keep taking the Addison's to prevent any Addisons's crisis from occurring.

Where are you receiving treatment in Derbyshire? It sounds like they know quite a bit about AMN.

You ask about a neurologist. Actually, many AMN-ers see a consultant who knows about the metabolism of the body, rather than a neurologist. This is because it's the metabolism that's affected first of all by the bad gene, whereas the impact on the nervous system is secondary. I live in London, and see Dr Robin Lachmann at the National Hospital for Neurology and Neurosurgery, and he is a metabolic specialist.

Remember you can always ask your GP for a referral to someone like Dr Lachmann if you wanted.

You will see a number of posts here from one or two AMN-ers not based in the UK recommending drugs which are not available under NHS prescription here in the UK. Of course, you could try to get these privately at your own cost. But there's no proof that they will do a lot better than the ones you are taking now. I would advise only taking those drugs that are really necessary, and avoid things like Valium unless you have a temporary (hopefully) problem with depression

I do understand how good it would be to meet others with the condition. That was my first question to my consultant when I was first diagnosed over 30 years ago. Eventually I found one or two, and this led eventually to the annual AMN weekends we have, now run by ALD Life (aldlife.org). We have just had one of these, in May, and they are great for helping you find others to talk to about the condition. We also have sessions with researchers and clinicians talking about trials with new drugs.

AMN is not great but it can be something you can live successfully with. I am now 73 and I was working and travelling a lot well into my 60s.

Another important thing to do is to keep stretching those limbs. Find a daily routine to do in the morning. Do as much of this as you can. Keep moving!

Constipation may not have anything to do with AMN. Are you getting enough fibre in your diet?

The bladder infection you are getting is a bit concerning. You need to see a urologist for this and get some specific advice on this.

Al the very best to you,

Chris

(Founder of AMN Easier and forum moderator)

[Andrew-432 in reply to COwithAMN]

I see DR GT Gillet at the Northern General Hospital in sheffield bi am sure he has mentioned your doctor i see a urologist on a annual basis a bladder infection is common with neurological problems or so i am told i think the stretching will be a good idea and thanks for your reply.

[florida59]

Hi I'm a 57 year old man with AMN for over 10 years I take no medication , you have to stay positive and as active as you can as Chris said there is a lot worse out there. I live in Ireland and there is only 2 of us here with the condition that we know of. I was at the ALD Life weekend get together in May it is good too meet other people with this condition

[Andrew-432 in reply to florida59]

Thanks for your reply i do not take any direct medication for the amn i will take your advice and keep as active as i can.

[JasonHarnum in reply to florida59]

why florida in your username and nothing something like belfast?

[florida59 in reply to JasonHarnum]

I like to holiday in Florida and have family there

[JasonHarnum in reply to florida59]

makes perfect sense...You Irish are so practical!

[jordlee21]

hello andrew, i'm 26 and live in sheffield so not to far from you. dr gillet is my consultant at the northern general also. i was diagnosed with AMN in 2012 but i was showing signs of walking difficulties and balance problems a few years before. i now need crutches to walk been on those for a year or so. only medication i take is hydrocortisone, my bladder is the main problem for me now as i'm constantly needing to go where ever i go which is a real pain! been offered solifenacin for my incontinence but i'm reluctant to take these due to the side effects and dont want to rely on to many different medications. i stretch morning and night to try and ease my stiffness and i try to keep as active as i can. i feel quite down somtimes and really miss how i used to be fit and sporty, but i just try to remain as positive as i can be you never know whats round corner. all the best jordan.

[Andrew-432 in reply to jordlee21]

Hi Jordlee21 it is nice to hear from somebody close by i also use crutches to walk but still not very good i can make it to the car i use a wheelchair for trips etc. My bladder is also a problem as was a real pain years ago i take oxybutanin but this makes you hold on to the urine longer but when its ready you go where ever you are and you have to get used to this and try and time it right. I also have a bag on my leg now so i can pass urine as i need to and empty the bag when full i think you should try this you just dribble in to it and empty it as you please hope to hear from you soon.

[jordlee21]

thanks for your reply andrew. its interesting to hear how someone close by is coping with AMN as theres not many of us about and also with it effecting us all differently. i saw DR Gillett on monday and had few blood tests, he says i might have to up my hydrocortisone to a higher dose, says this may help my bladder. But he'd also like me to try the solifenacin tablets to see if they make a difference. i still feel a bit reluctant to take them but think ill have to give them a try as i'm having to urinate just about every where i go now (embarrassing)! i feel like this is my main problem holding me back, i could just about put up with my poor walking if i wasn't nearly peeing myself all the time. hope your well jord. ps love a good walk in derbyshire.

[JasonHarnum in reply to jordlee21]

Jordan & Andrew, have you guys looked into botox? It was/is a game changer!!! shoot me a line if you'd like to chat further on it. [e-mail]

Jason

[jordlee21 in reply to JasonHarnum]

hello jason sorry for late reply, ive heard of people using botox before but its not something that my consultant has suggested for me. But thanks for your advise.

[JasonHarnum in reply to jordlee21]

Jordlee, Does your consultant have AMN? Asking because it's easy to 'suggest' when you're not the one dealing with it.

[jordlee21 in reply to JasonHarnum]

No he doesn't have AMN, and I agree with what your saying. I am going to try taking the solifenacin tablets see if these help my bladder.

[JasonHarnum in reply to jordlee21]

for sure, better to take a pill than be poked by a needle Please do let me/us know how it goes with it..

[Andrew-432 in reply to jordlee21]

Thanks for the reply it is good to know of somebody close by when i saw Dr Gillet he told me he had around 10 patients with AMN but they could be in quite a wide circle. It would be nice to go for a good walk anywhere except Meadow Hall. I would give the pills ago just to see if they help but the bag is a better idea as you empty it as required just keep doing your best and again thanks for the reply hope to hear from you soon.

[jordlee21 in reply to Andrew-432]

funny you should say that i've not been to meadowhell for about 3 years cant stand it either ha. think i might have to try the bag eventually seems a good idea, where did you get yours from if you dont mind me asking? when do you next see Dr gillett? i only usually see him once a year but this time its been about 18month since i last saw him.

[Andrew-432]

It is over 15 maybe 20 years since i went to meadow hall also cant stand it. I got my first bag off the district nurse from my gp surgery after then just added to my prescription. I see Dr Gillett once a year usually around march time let me know how you get on.

[jordlee21 in reply to Andrew-432]

Cheers for that. i saw Dr Gillett last monday he did a few blood tests to see if my hydrocortisone dose is correct, i currently take 5mg morning and 5mg after dinner. Hoping this is still fine as i feel ok and i dont like taking loads of tablets if i can help it. Do you see a neurologist at all? i see Dr lindert at the royal hallamshire hospital in sheffield once a year. Hope your well.

[Andrew-432 in reply to jordlee21]

I do not see a neurologist not sure what they do, i take 10mg in the morning 10mg at dinner and 5mg at teatime of hydrocortisone and i feel a lot better taking it than i did before. I will take tablets if they make me feel better just try them if nothing happens give them up thanks for your reply and i hope things get better for you.

[Dave381]

I just have to add my experience with Botox in the bladder- it really is life changing - in the 2 years since I've had it (once a year) - it's completely solved my bladder problems. It does mean you need to use intermittent self catheterisation but you soon get used to it. The procedure itself is uncomfortable but very quick and totally worth it. I tried various drugs for my bladder and none of them had any real effect. I wish I'd done it earlier.

[Andrew-432]

I will talk to my GP about this but i have a bag on my leg and just let it dribble into this and empty it as i need to i have even had able bodied friends say they would like one as they can then go when they want and not rush when they need to and thanks for your reply.

[StevenSims]

Hi,

The infections are caused by the stale urine being retained! I recommend intermittent self catheters, I had to use these first 5 years ago due to high pressures backing up to my kidneys! Like Dave I had the Botox procedure in March and it has made a huge difference! It's just starting to wear off but I'm booked in to have it repeated! The catheters were uncomfortable to start but it's just routine now!

All the best

Steve