Just one more....

[Nordek]

Normally I try to be upbeat and positive,but in reality I feel alone,confused and lost as far as the future. Is this normal, or am I doing something wrong? When I was first diagnosed with AMN, I was actually relieved .....I had a reason to be lurching , wobbling and falling all over the place. Next, I needed to see what I could do about my situation....at every turn, I was met with ....this is your lot in life...there is nothing you can do ! We tried ....but inevitably ended up just doing whatever we were told. I had no idea what to expect, so accepted whatever happened as my normal ! Baclofen tablets made a zombie out of me....the baclofen pump changed my life, giving me a lot more freedom of movement. It never occurred to me to ask about side effects because by this time I assumed this was the only choice I had ! Now, whatever changes occur, I just see as my journey. I have lived through two baclofen overdoses....fitting, siezures and total inability to walk, even talk ! I thought this was my normal ! I never went to the hospital for addisonion crises ...again I thought this was my normal ! I was led to believe....if I stopped using my legs.....I would deteriorate quicker ! So I have lurched , wobbled and struggled my way through life....again thinking this was normal ! As a result I have shattered many ribs on many occasions , have broken a total of five vertebrae ....only one of which is not really bad .....and lost lots of skin from all over my body !!!!! I accepted this was my normal....! My wife and I are exhausted....sometimes we just hold each other quietly....trying to give each other strength ! This doesn't last long though....my hands/ arms now jump and punch . My question...if you can help....what is the norm, what can I do and what should I expect ?

[monkeybus]

Hello Nordek,

Strange, isn't it? In many ways this isn't a terminal disease, not like some cancers, or even our close cousin ALD.

might rob us of our ability to walk or work. I can live without work.

Still, it's an awful disease. Though on Modafinil and 4-aminopyridine I feel great. Boundless energy (and I was chronically fatigued for nigh on 10 years).

I often forget my plight until I stand up to answer the door, and promptly commence to stagger about. Rarely fall over on 4-AP though.

If the last 10 years has taught me one thing, it's to never be satisfied with the medicines chosen for me by overworked, (largely) uninterested doctors.

I'm still researching new medications.

Not sure where this reply is really going.

Still, take care. Talk to you soon.

[Nordek in reply to monkeybus]

Thank you Monkeybus, it is so amazing, reassuring to know there are others out there....I will bounce back.....I will start problem solving and I will make each day count......

[julie_]

Hello Nordek,

Indeed this is a strange event in my life as well. I live in NYC and have been active my whole life, not so much in sports but strength training in the gym several times a week. I was diagnosed 4 years ago when I was 46 going on 47. I learned what was causing me to trip and fall (hard) all the time, why I was losing my balance, why I had an awkward gait and why light weights seemed so heavy. I had physio for about 3 years from a great therapist who treats MS patients. We stopped our sessions because he didn't think he could help me anymore. I was doing very well on my own.

During that time, I returned to the boxing gym. It's the only work out that suits me because I like it and because I can get my muscles warm, for even a short time. It does not last, but I consider it therapy. I box 3 times a week now. I will turn 51 in October and I don't know how long I can keep up the training!

I am taking baclofen and like you if I take too much (10mg tablet at once), I get too foggy and sleepy. Can't have that at work! I do take 7.5 mg once in the morning and once in the afternoon about 5 hours after the first dose. If I feel I need more, I would take another 2.5 mg. I have a feeling I may be increasing like this more often going forward. The good thing about this is I can have a little coffee in the afternoon and it won't keep me up!

I walk with no assistance currently but I am aware that I may need assistance in 5 to 10 years. I have been having extreme difficulty walking in the last 3 months during my menstrual cycle - so something else that comes into play! No amount of training or stretching seems to help me during this time. I am exhausted by the end of the day but I continue my usual routine. Everyone can see my struggle to put one foot in front of the other. When I'm not on my menstrual cycle, I revert back to the usual state - whatever that is.

What is normal? I don't know. For me, this is my 4th year and I'm glad to be able to read the experiences of others. From your earlier story, you seem to be doing very well after all this time. Keep it up! We are all here and want to learn from you!

[SongStream]

Nordek,

I hear you loud and clear. I'm 52 and my brother (54) have been diagnosed with AMN (and Addison's) for 16 years. I just moved 2 days ago and had to choose between going to the gym or move preparation (cannot do both due to fatigue).

Well, the day after the move, my legs were so unrecognizable to me with all the excessive stiffness and pain. The repeated stumbles really impacted me. I see now that the gym was my saving grace with the stretches and yoga along with the elliptical and weight resistance. I cannot fathom how my condition would be without it! My brother is in a wheelchair and I have had some bad falls, luckily with no injuries.

I do remain thankful and humble. I am fortunate I didn't have ALD which I think my half brother may have had. I now concentrate on living in the moment and being very grateful to have found a supportive and understanding community.

'Cause it seems like no one else really gets it.

Steve in California

[mariagno]

I was diagnosed in 1995 at age 33. I am 52 now. I tried everything to stay on my feet while being so vain. I fought canes, then arm crutches, and walkers. I hated AFO's and tried the Bioness which I liked. I, too, felt that staying on my feet and staying mobile would be the best. I take Gabapentin, Baclofen, Modifinil, and others. The key for me is to manage the doses I take each day based on how I feel. I try to take smaller doses more frequently during the day rather than big doses a couple of times a day. The frequent smaller doses help avoid the overdoses or the drugged out feeling.

But sometimes depression can set in. I needed to take an antidepressant for a short time to overcome a bout. Just make sure some one that you see everyday keeps track of your personality changes and you set a time to come off. The one I was one also helped with the neuropathic pain.

But the falls began to take a toll. Three broken ankles, a broken vertebrae, a broken femur, bruises, and knees so scraped they never seemed to heal. Each broken bone required surgery, hospital stay, and weeks of rehabilitation.

So now I primarily use a manual wheelchair. No electric power, human power. It is a TiLite and is extremely light weight. I have one for the house and one for the car. I can get it in and out of the car by myself and maintain my independence. I can go to the mall and zip around a whole lot faster than when trying to walk. The exercise using my arms is good and I can visit places I used to avoid because of the long wobbly walks.

But I still work the legs. In the summertime, it is the pool. Living in Texas, we have one in the backyard. The dog and I spend hours in the pool. My son and I can play basketball in the pool and do more "normal" father son sports. I am blessed to have this. Find a rehab pool, it will allow you to get on your feet safely.

The other item I own but many gym's and rehab places use these ,too. It is a sit down elliptical made by NuStep. It is very effective in working the arms and legs. On the days the legs are a little weak, the arms help with the work out.

I also have a power assisted set of bike pedals. It has a small electric motor but you can pedal it too. It works the legs and flexibility while sitting down. Google "powered exercise pedals"

A good solid walker is good, too. I make sure to walk, do squats and other exercises on a carpeted floor.

Finally, weights. I keep my upper body strong because it is needed as the legs weaken. Don't forget to stretch.

I also found that making sure you keep a sense of purpose. Do whatever you can to have a reason to get up each day. Whether it is work, family, volunteer work, or just anything. You have to do something. Set the alarm and get up. Don't be afraid to lean on others to achieve this.

For me, I went through the following stages

1) the OMG, what is going to happen to me.

2) the "is there a cure" stage. Searching the web. Trying to find a cure

3)Treat the symptoms that are getting in the way stage. Usually a lot of meds pushed by AMN unfamiliar doctors.

4) Taking control of my health stage. No longer letting the doctors control my medications and treatment. Researching and asking questions. Pushing to try new things. Getting in better shape. Exercising the way I can, eating better, getting the weight under control, supplements, and no longer being a victim.

5)Acceptance. AMN is not who I am. Plenty of people have had bad things happen to them. Acceptance means you know you are going to live life differently but the challenges do not define you. I have no idea what the next few years bring. The important thing is Quality of Life. Make each day count and do the best you can.

I wasted 15 years in stages 1-3. I had small kids during this time and missed a lot of their stuff. I avoided going out except to work. I regret missing out on a lot of things in that 15 year period. My wife is a saint. You do not need to be married, only to have someone to lean on.

I met with Dr. Hugo Moser in 1995 at Johns Hopkins University. For those who do not know him, he was an early researcher in Leukodystrophy including ALD and AMN. I asked him what was going to happen to me. He explained the randomness. He said he has seen young men with a lot of issues and old men with no issues. He told me to make sure to get regular MRI's and each year without brain or spine involvement could mean a better outcome. He told me fitness was important (but I ignored this until a couple of years ago).

So this has been my experience. I had to look hard to find a general practitioner and neurologist that would accept being partners in my health. They need to listen, take time to learn about AMN, take chances, and be helpful. This has reduced a lot of frustrations I had. Don't be afraid to fire your doctor.

[monkeybus in reply to mariagno]

Mariango,

A great read. Thanks for that.

I'm 44 now, I'm basically 10 years in but looking back I realise that I had minor symptoms since I was about 7 years old. Fatigue, odd gait, stumbling. I could never walk and carry a cup of coffee, always spill it.

I've tried so many tranquilisers, muscle relaxants, nootropics.

I've settled on 4-aminopyridine, 4-AP-3-MeOH and Modafinil.

The first two keep my spasticity in check and the Modafinil sorts out my fatigue.

I'm going to try industrial strength doses of Biotin next. That and Low Dose Naltrexone.

I'm reading a lot about remyelination. I'm going to start a thread about this.

I spend a lot of time reading the Multiple Sclerosis message boards. Some extremely proactive people on there.

I'll post more on this later.

Take care everyone.

[SongStream in reply to mariagno]

I am revisiting your post and exclaiming, "Wow!" This is a powerful and inspiring read and one that I will revisit often. In fact, I copied and paste to my notebook.

Your post is also a great referral to those recently diagnosed.