ALD in women.

Hi everyone, I was told a few years ago, that I have mild nerve damage in my legs, due to ALD. I already knew I was a carrier. I also have Rheumatoid Arthritis, which I take meds for. After reading how some of the women suffer with ALD, it sometimes sounds like you're describing RA, so my question is, do you think my ALD could be getting worse, or is it my RA. I'm not under a neurologist, as after the Dr carried out nerve conductions, he didn't bother keeping me as a patient. I asked if I should have an MRI, and he said, 'What's the point, I know you've got ALD'

It's just that it's becoming so frustrating, because Rheumatology are saying in borderline remission, but I have a lot of pain in my legs and feet, some days I cannot walk at all. I feel I'm not believed when I explain how I am.

I hope this all makes sense. Karen x

2 Replies

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  • I can't answer your question, but I fully understand what you are saying. We have a (very) rare condition which is easy to diagnose (VLCFA / genetic test) but the disease itself is poorly understood. Thus it is pretty easy for a consultant to just place all of your symptoms in the ALD/AMN diagnosis and ignore any other possible disease. This is especially important with more common conditions like arthritis, which you have, but also (relatively) common neurological conditions like MS.

  • Thank you for your reply Wilburlois15 x

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