Age: How old were you when you were diagnosed? - AMN EASIER

AMN EASIER
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Age

Travzw
Travzw
19 Replies

How old were you when you were diagnosed?

19 Replies
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monkeybus

I think I was 43. I was originally diagnosed with Hereditary Spastic Paresea when I was 40.

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mjwellman

23

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COwithAMN
COwithAMNAdministrator

Click on Home or Posts, then click on Polls at top right. There are separate polls for men and women. This has been running for a long time and therefore gives a pretty good estimate of the typical or common age of diagnosis.

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StevenSims

I was 26 when diagnosed with addisons with no clue of ALD until I was diagnosed when I was 33 10 years ago!

All the best

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Magnolia209

52

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SongStream

17-Addison's; 37-AMN. Both after my brother was diagnosed with each.

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Brian369

27 when diagnosed with Addison's and diagnosed with ALD when I was 45

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Lead-foot

I was 44 after lots of test for MS and HSP

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Roker1176

42

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ddwoodham

I was 50 and was originally diagnosed with unknown neurological disorder after MS had been ruled out.

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deengo

39 after 2 years of testing

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KennyInPA

32 - Addison's & AMN (Based on two older brother's.)

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easygoin1

Addison's at 23 in 1989 and ALD at about 25 and changed to AMN as the knowledge changed.

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mariagno

33, when I started falling while jogging

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Travzw

So it seems mjwellman is the youngest person I’ve come across. I was diagnosed when I was 19. I’m now 28. I can remember times when I was very young that I had some symptoms. Constipation was seemingly my first symptom and I was around 8 years old when that started to affect me. I always felt like I ran differently from other kids in school. The next symptom I noticed was ED when I was around 14/15. My doctor finds it a bit odd that there’s really no one diagnosed quite as early as me. I would have been diagnosed much earlier if I had went to the doctor earlier.

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wilburlois15

38. I first saw someone about my walking when I was about 32 but when it wasn't MS the trail went cold. Then restarted the process about 37. Initial suspicions of HSP dispelled with one VLCFA blood test. I am now 42.

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wilburlois15

My guess is that if there is a family history then the entire process is quite fast. For the rest of us, AMN is a rare and non-acute disease, and it can take a very long time to get a diagnosis.

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Travzw

I was diagnosed on my first neurology visit. He did blood work and called me about a week after to ask me to come back ASAP. He wouldn’t discuss the results over the phone. My mother is now 48 and she had a visit with my neurologist last week and he basically told her that she has it because she has a defect in the same gene as me. We are waiting for her blood work to come back. She walks very poorly now and has almost caught up to the point that I’m at with walking.

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Aaron98

29 years old, both for Addison's and AMN. With my family history, I should have been diagnosed much earlier, but my former GP was a bum and wasn't willing to go the extra step to find out what was causing all of my symptoms.

The GP who diagnosed me was unfamiliar with ALD/AMN, but did all the right things, ordered all the right tests, and probably saved my life concerning adrenal insufficiency.

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