Some good news

I had my annual meeting with my AMN/ALD doctor a couple of weeks ago. Not a lot to say to be fair, and clearly there isn't an awful lot they can say about prognosis, etc, but I did get a good piece of news about my condition. I was diagnosed a year ago and at the same time I had an adrenal sufficiency test. This showed that my adrenals were fine. This time, I asked if I'd need to have the test again. The answer was "no" ... apparently if you have had symptoms of AMN for say 5 years (>10 years for me), and you don't have adrenal insufficiency then it is very unlikely that you will ever develop adrenal insufficiency. My doctor then said, of course, that nothing was impossible, but it's nice to know that most likely I have one less thing to worry about.

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  • Glad to hear the good report! Any good news in our condition really helps. 

  • Hi Angus

    That's good news and I can confirm that your Doctor was right at least from my own experience. After 30+ years with AMN, my adrenals are still fine and I don't get tested anymore.

    I see you are UK based and therefore wondering if you are coming to the weekend get together this year. Or perhaps you are are near to one of our other members and could meet up sometime. I am in London.

    All the best,

    Chris

  • I haven't seen any details of the event, although my doctor (Dr Murphy at NHNN), said that it was in late May. If that is the case, I am concerned it'll clash with half-term holidays, but I'll see what I can do.

  • wilburlois15,

    I'm sorry to say, but this information is not necessarily accurate. Unfortunately this disease does not lend itself to many generalizations.  From the literature, I believe that men may still develop adrenal insufficiency later in life.  Also, just because you do not currently exhibit signs of AI, doesn't mean that, in the event of a bodily trauma, your body will produce the necessary hormones in response.  Put another way, you could still suffer from an Addisonian crisis without being diagnosed with Addison's disease.  Experts recommend regular AI testing, and even wearing a medical ID bracelet.  Something to think about.

  • I was just saying what my doctor said. I have no reason to doubt her, but as she said, nothing is impossible so I'll always be on my guard,.

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