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Striker Message
1 Mar 2013, 03:21 PM

Hi all, hope all is great. My older brother passed away from AMN quite a few years ago. I had tests completed on me when he was originally diagnosed, as we were the only two children, both male. I was told I was cleared. Many years later, I am now 46, I have started having what I percieve as symptoms that I watched my brother go through, I have since had a brain MRI / CT and have been told it is OK. What irks me is that every medical professional i attended, had no idea what the actual genetic affliction was, i spent more of the consultation time with the doctors explaining to them what AMN was, than them assisting me. I still do not feel happy about the validity of their report to me, as I saw what my brother went through many years ago, and there was many a misdiagnosis. Would anyone here be able to assist me in informing me what do I request to ensure I get a correct check up completed. It would be much appreciated. I am situated in Australia, at the time of my brothers diagnosis, he was the only person with AMN here, so many a medical professional was not educated in this. Once again thanks for any info...
stevensims Message
1 Mar 2013, 04:32 PM

HI, VLCFA's test is diagnoses and you should also be tested for Addison's disease it is very important for this to be done asap! If you go onto this forum it's UK based but there is a guy there from Australia is name is AussiBob and he can give you the info you need or you could post this same question there? Best Wishes Steve
SallyBuckner Message
2 Mar 2013, 01:36 PM

You can get a certain diagnosis with a test conducted by the Kennedy-Krieger Institute in Baltimore; a small scraping of skin was all that was required of me. And yes, it's very important that you check for Addison's Disease, which is associated with AMN and is easily treated. Wishing you good luck; I hope you'll keep us apprised.
KimberlyClaraNicole Message
11 Mar 2013, 06:58 PM

I recommend getting in contact with the Kennedy-Krieger Institue as well. Everyone in my family is tested through them and the doctors there actually know what they are talking about. it's a real relief.