I truly think it's ALD/AMN!

So, my boyfriend started having seizures a couple of years ago. He has them every day. Due to insurance issues, it's been hard to get him into see a neurologist. I was researching what could cause his seizures and came across ALD and all these other things he has going on are suddenly explained as well as the seizures. It would explain almost everything he is going through. We see a neurologist in a couple weeks and I am going to try to get his primary doctor to order the VLCFA test before we get to the neurologist just so it's either ruled out or we have more focus once we get there. I am probably going to have to fight to get this done. I am wondering if anyone knows of a man (he's just turned 30, by the way) who presented with seizures before any of the other issues were bad enough to take notice or be very disruptive.

As a side note, when talking about all his symptoms, it seems like other issues, such as clumsiness, mood, bowel, and sexual dysfunctions have been going on for years, just overlook as he neglected himself before I made him start taking care of himself.

Any information would be great!!! It's just so hard to find specific information without talking to other people.

3 Replies

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  • Once you have the results of the VLCFA test I will have a chat. Until then it is just a guessing game with needless worry attached. All the best

  • ALD has symptoms of many different conditions and diseases. Main reason why it is rare I believe, most have a hard time getting diagnosed. It took me 12 years to find a doctor to believe me and run the test. They spent 3 days testing for other things before they did the gene test.

    Stand strong and don't stop till they have ran all the tests.

  • you're a good girlfriend! AussieBob is right, it's truly a guessing game. Hopefully you and him won't have to guess much longer

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