AMN and me

[Nordek]

Hi.....I was diagnosed with AMN eleven years ago when I was 51. I had always been an outdoorsy sporty type person, and went on to be a teacher trained in physical education and remedial gym. I played a lot of sport and referried and coached many teams in many sports. When I couldn't keep up with my seventeen year old son on the basket ball court, I put it down to old age. It wasn't, and I was told I had AMN. By this time I was stumbling around like a drunk......and I couldn't feel my feet. The news was a bolt out of the blue for me, but after some research we realised that both my maternal uncles had died from ALD and AMN . I now have a team of specialists supporting me. I have regular neurological tests and a MRI once a year. I wear callipers to help me walk and lift my toes, as well as a baclofen pump inside me to regulate the flow of baclofen into my spine. I take cortate regularly and my wife carries cortisol injections for emergencies. I have finally reached the stage where I need a wheelchair when I am outside the house...I am not strong enough for even small walks now. The falls have taken a toll .....many broken ribs, broken spine and countless cuts and bruises. The joke always was .....dad can't walk and talk, now ....grandpa can't walk. As each new challenge pops up, we find a solution. Our philosophy is ....no regrets and we make the most of what we can. I don't know anyone else who has this disorder, and was hoping for any new ideas or knowledge ....whatever is out there. Maybe my experiences can help someone else.

[monkeybus]

Hello Nordek, I thought my falls were bad, but all I have is a permanently achey shoulder and damaged knees in all of my trousers.

If it wasn't for 4-aminopyridine, I couldn't walk. All kinds of miracle stories about it helping people with even complete spinal cord injuries.

I was only diagnosed a week or so back.

Results of my brain MRI in two weeks.

Was planning to work until I was 75.

Have to rethink that now

[Nordek in reply to monkeybus]

Thank you so much for taking the time to reply....as much as I have tried to remain positive, it is very lonely to have a disorder that no one has ever heard of. I do so hope your MRI goes well....I am having my annual one next week ! Feel free to keep in touch, and good luck for the future.

[monkeybus in reply to Nordek]

Nordek, my friend.

Is it right? Have you had 11 years of annual brain MRIs?

[Nordek in reply to monkeybus]

Hi mate....yes, eleven years of annual MRIs and twice a year I undergo a battery of neurological tests....all part of my life now. I must admit this is not how I saw my life going.....I visit the endocrinologist twice a year, and get the baclofen pump refilled every ten weeks. I visit my local GP once a month....unless a problem crops up ! Now, I visit a psychologist once a month to chat about how I feel and coping mechanisms....my wife also goes, because she was feeling very alone and the pressure of keeping me upbeat and safe, was taking its toll on her. We are very fortunate to have access to a good medical system in Australia, it does make that side a bit easier.

[monkeybus in reply to Nordek]

Do you get any mental effects from the Baclofen pump?

I used to take 10mg every three hours. I quite enjoyed it, music sounded very good.

For about 6 months, I relaxed into the being stoned all the time mindset. Had to stop in the end.

Took some last week when I ran out of Gabapentin.

Realised then that Baclofen was an awful drug (taken orally).

What is the anticipation like when you are waiting for your MRI result?

[Nordek in reply to monkeybus]

Hi my wobbly friend....baclofen pump is a godsend for me. I could not cope/ exist with oral baclofen in the doses I needed to take. The baclofen pump is inserted under the skin in my abdomen and the tube goes through my body to the spinal column. Baclofen is metered out in micro doses constantly....it does not go to the brain. Therefor, no fuzzy head. When I had it put in initially....I did a little dance for the Prof....! He was so stunned, he took a video....!!!!!! Mind you, I did need to learn to walk again first....my feet felt so light. The pump lasts 7 years usually, but I did need to have mine replaced last year because it broke down !!!! I must tell you however, that my walking is now very unstable, because I have no feeling in my legs from the knees down....I walk from memory !!!! I have now lost feeling in my hands too.... As for the MRI, I am lucky....I am able to put certain thoughts out of my head. I actually sleep during the entire process....my wife is the one who worries, even has nightmares !!!! I think it has to do with the fact I have learnt to sit back and just go with the flow . I am lucky, my wife runs the show...she organises everything, takes me where I need to go and tries to make everyday count. She makes me do activities to keep the brain going and tries so hard to keep me fit, healthy and happy. This is no small feat given we live in a three storey house in the bush...she has moved everything downstairs, and packed away all her treasures !!! All in all I think I am blessed, but it did take a lot to get to this place....good luck my friend.

[KeithS]

Nice to hear someone sounding so positive. I'm 48 and during the past year I've felt my walking getting gradually worse. I'm feeling a lot more stiff and also getting more aches and pains too. I think I'm going to have to go to the docs re: the stiffness but my Mam and sister have tried baclofen and have found the side effects far too strong, outweighing any benefit. I'd like to know others views on this?

I'm off on a sunshine holiday next week so hopefully the warm weather will take away some of my stiffness

Good luck, Keith.

[monkeybus in reply to KeithS]

Keith, you are only 4 years older than me.

Last night I shot a video of me on modafinil, 4-aminopyridine and Gabapentin.

Probably on Sunday, I'll shoot one of me with no drugs at all.

A sight to see, tin man from The Wizard of Oz. Hanging onto walls, really cannot walk without something to grab onto.

I'll get them up on YouTube and you can all have a look.

Course, my spasticity comes and goes (doesn't really go). Last night was an excellent, low spasticity day.

Does anybody else get this?

Off to work soon.

Talk to you all later.

[Nicolas]

New knowledge that is helping more and more of us: the wahls diet, look it up!

[bluejadedwho]

Hello! I would love to chat and share experiences.

Maybe over Skype?

Patrick

[fightald]

For you gents in Australia, are you familiar with the ALF organization? They offer a wealth of information and support. Bob Wyborn helms the ship and he is a super guy. I suggest you check out alf.org if you haven't done so yet. I run Fight ALD here in the states and we are both members of the ALD-AMN Global Alliance. Another resource, which I know is difficult for you "out of towners", haha, is the ULF (United Leukodystrophy Foundation) family conference held in Omaha July 15-18. Many affected men and women attend along with doctors who specialize in the treatment and research for leukodystrophies also attend to share info. Their website is ulf.org. Hope this is of some assist. Janis

[SongStream]

Reading everyone's comments brings me assurance and goodwill. One thread in this AMN mess is humor and also applies on what I learned from my Dad, who was in the Marines here in the states, "adapt and overcome".

I am 52 and have been diagnosed with AMN since 1999 after my brother began having gait problems (Actually, it began after I was diagnosed with Addison's disease in 1979 after my brother had an Addisonian crisis.) This diagnosis gave me reason for my occasional trips, minor spasticity as I was then a vocalist fronting a jazz septet. I then returned to investment banking where I then went on disability due to neuropathic pain in my feet along with increased spasms, spasticity and fatigue. Medication only added to my fatigue. I now only use Gabapentin in the evening along with Baclofen due to the sedative effect which brings me to sleep, although, there are frequent trips to the bathroom. I also have testosterone injections every two weeks along with annual MRI's. I recently had a bone density test which technically resulted in osteoporosis in the spine.

Addison's disease brings more complication with fatigue. I follow online discussions on Addison's disease on inspire.com and am surprised on the "stress" dosing for fatigue which is sometimes three times or more of my dosage. Naturally, I am concerned with my bone density which my endocrinologist says is normal for my age.

One last thing, I am presently packing for a move and I've noticed increase neuropathic pain especially in the evening (at times I wish I could detach my feet it is so bad) and extreme stiffness since I haven't been to the gym. The fatigue (and stress) associated with move preparation just adds to it. However, with all of this going on, I remain positive, appreciative and thankful. AMN has taught me a lot about challenges and learning to adapt. When I learned that my half brother died at an early age (which I am certain was from ALD), I do not take for granted that I was spared.

So, that is AMN and me, Cliffs Notes version.

Steve

[countofstgermain]

Good luck, my baclofen pump leaked from its spine hole and left me a softball sized zit of spinal fluid. It was my fault for sneaking outside for a cig right after surgery. The 2nd try, they chained me to the bed with a catheter... They cranked it to top level and my leg still wouldn't straighten fully, so I needed to go under the knife. That was so priceless. every 5 years we should get a free hamstring lengthening. I boycott walking now in fear of breaking an arm... came close too many times