Female ALD Carriers

Would anyone be able to tell me how a female is affected by ALD? I have supposedly had MS for 34 years. This is now being called into question following a different Neurologist's thoughts on a recent brain scan. Knowing what I do about MS, I think that this is what I have but am currently awaiting the opinion of a more experienced Neurologist.

6 Replies

  • You can do a Search (see upper right hand corner) by typing carriers. I see it pulls up many questions and responses that may help you. There is a lot of information here!

  • I believe it is quite varied and is usually something that happens later in life, although I don't think that means it can't affect women younger. The ALDLife website has some good information. Personally I am a carrier but don't have any symptoms. I have been to the neurological hospital in London where I was told it usually presents itself in women with bowel problems and leg pain first and that some carriers are lucky enough not to get any symptoms.

    There are definitely lots of articles on the Web that should be helpful. Hope you find some answers. Alex

  • I am a carrier and have had symptoms for the past 16 years. I use a local MS centre and would say that we have similar symptoms. As Julie says there are many discussions on here with female carriers and it will definitely help you.

    Where do you live? Maybe someone on here is seeing the same neurologist as yourself.

  • Thank you Julie, Alex and Cherie for your replies. I am currently waiting to hear back from Prof. Scolding of Southmead Hospital, Bristol. He is looking at results to tests done when I was first ill at the age of 16. That was 34 years ago! I can still walk but with an aid, however I need a wheelchair outdoors. It was quite a surprise to have the suggestion that I may have ALD rather than MS. However, I do know that both my blood tests and DNA came back negative to ALD. The first Consultant still wants it looked into though. Heather

  • Hi Heather

    When I was diagnosed the result came back positive however the second test came back negative.

    It was eventually confirmed on the results of the third test a year later. I hope you get an answer soon.

    All the best, Cherie

  • Hi, I am a carrier of ALD, and do have some mild symptoms, can I ask what prompted the investigations into ALD, is anyone else in your family affected by ALD? Normally the DNA genetic testing is very accurate, as they know that the defective gene is always on the ABCD1 gene often blood test results for very long chain fatty acids can give a false negative in females, due to us having one good x chromosome.

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