Newly diagnosed

Hi, I was really glad to find this community!! I have been living a quite problem-free life with Addisons disease since 1990. During the last few years I have had some vague problems with my legs, hard to walk downwards in stairs, stiffnes, some problems with my balance etc etc. This summer I was taken into hospital because of severe tiredness, increased problems with my balance and walking problems. After numerous tests I was a few days ago diagnosed with AMN at the age of 43. It's located in my spinal cord and not cerebral (yet), which is a slight relief.

My doctor has given me good information about my syndrom, but I can't help to feel a bit confused, scared and worried about my future. For how long will I be able to walk? Can it spread to my brain? Can I continue my on my job? Will there be a cure? etc etc....

I would love to hear some experiences, tips (and maybe supporting words;-) about what to expect from a life with AMN.

Kindest regards

Jesper

6 Replies

oldestnewest
  • Dear Jesper

    Welcome, as I sometimes say, to the club which none of us asked to join. I am the originator of this patient forum which was intended as a small effort to help make AMN easier to deal with - hence my attempt at a rather lame play-on-words.

    I can relate very well to your situation since I was first diagnosed with AMN more or less at your age. I have now just turned 70, so perhaps I can claim to represent some evidence that one can live a pretty full life with this disorder. I have only stopped doing full time work within the last 5 years and plan to keep working in some capacity. So you might well find that you can continue to work for a considerable period of time, unless you work in something that requires a lot of physical activity or strength.

    Most of us on this forum could write a book about our experiences with AMN, so I won't try to comment on every aspect at this first writing. Anyway, we all experience it slightly differently, even though perhaps 80% of the symptoms are common to us all.

    The first thing to say is that the progress of the disorder is very slow, to the extent that it's usually only after a few years that one notices some degradation of one's mobility, or increase in other symptoms. So after my diagnosis, I simply kept on doing everything I did before, more or less.

    As you have noticed, AMN affects the leg muscles and balance. On the last aspect, you may need to use a walking stick just to make sure you minimise the chance of falling. I was probably reticent to admit I needed a stick, and thought I would be embarrassed, but it's amazing how quickly people accept your new situation and are supportive.

    The thing you can do something about is those leg muscles. So keep stretching them. Develop your own routine and do it every day. I do about 30 - 40 mins every morning and it really helps. Some of this is probably psychological but it still helps. Gym work is also really helpful.

    You will probably eventually notice some problems with urinary incontinence or bowel problems. Again, for most of us, these are things we can manage with a bit of forethought and self-care. For example, don't drink coffee and the go on a two hour drive. Some AMN-ers have to use catheters but I have been able to avoid them so far. It's important to look after urinary health as urinary infections left untreated can be damaging to the kidneys.

    You ask about whether AMN can spread to the brain. Yes it can, but evidence so far is that is is the exception - I have heard it quoted as being in less than 20% of cases.

    Being a rare disease, there is not a lot of research going on. ALD Life is doing some great work to raise funds for research and I can update you more on this whole aspect if we can meet.

    Talking of which, you don't say where you live. If it's the UK then our weekend AMN get together is coming up this weekend and several of us on this forum will be there. If you could come to that you would be able to meet fellow AMN-ers. Let me know if that is possible.

    The best advice I can ultimately give is to keep as fit and active as possible, think positively and try to live your life as normally as you can.

    I'll finish now though there's lots more I could say. I look forward to hearing from you again.

    With very best wishes

    Chris

  • Thank's for your answer Chris, it really helps to hear the facts from someone how knows about the reality of things instead of just reading medical facts from different sites on the internet. Regarding urinary I have had problems with urgency for several years and I'm now quite sure that this is a symptom from AMN as well.

    I will sure take your tips about stretching and gym training and start up my training again.

    I'm living in Sweden so I'm sorry to say that it will be a bit difficult for me to join the meeting this weekend. Not impossible that I will join sometime in the future though.

    Best wishes

    Jesper

  • Hi Jesper

    I am sure you will be very successful in coping with AMN. As far as I know you may be the first member of this site to be based in any of the Nordic countries. Thank you for filling in your profile. One useful thing you may be able to do over time would be to locate other men and women with AMN in Sweden. I imagine they would likely be referred to only one or two main centres, I am right? It's always a bit depressing not to be able to meet other people with the same condition when you have a rare disease. I am sure there will be some others. It took me a long time to find people 30 years ago when I was first diagnosed.

    Chris

  • Hi Jesper

    I am a female, 51 years old, also living in Sweden and I have AMN. I have the same problem as you with my legs and balance, since 40. The doctors told me that it is olny 100 persons in Sweden with AMN/ALD, and I have contact with noone. I´m feeling alone with my problems and wonder if you want some contact?

    Best wishes

    Karin

  • Jesper and Karin

    Well, that sounds like a good idea, since you are both in Sweden!

    I suggest you communicate with one another using the "Message" facility. That way, only you are involved, so what you type isn't seen by other members. To do this, one of you should go to the other's profile and click on "Send Message".

    In due course it would be good to give everyone here an update on the AMN situation in Sweden.

  • Thank you Chris!

    I will do as you recommened and communicate with Jesper using Message. If he want to!

    Karin

You may also like...