I saw my neurologist on Wednesday to discuss my recent mri scan, he confirmed no gadolinium showed up on the scan which was great news, and there was no change in the scan from the last one. Once I came home I had received a letter from the neurologist who requested my scan, she also confirmed what the other one had told me however on the letter it confirmed the abnormality of the splenium of the corpus callosum was still there???? Is this normal for people with AMN or is this ALD? Feeling confused as I've read up about this and this is the early stage of ALD? Any help or advice would be great thank you.
Steve
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StevenSims
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My follow up is in 12 months time and a scan has been arranged for 12 months aswell, I think I should be getting another scan sooner from what I've been reading? I sent a message to Kim Hollandsworth yesterday in the Kennedy Krieger in the U.S. For her opinion?
If it is ald you can't wait 12 months which makes me think it can't be of great concern to the neurologist. Curious to see what Dr Holland worth says. Good luck fella
It was the same last year so I'm hoping it stays that way! It feels like I have a timebomb waiting to go off though! I'll let you know when I get a reply from the U.S.
Hmm, still don't understand. They should be able to explain in lay terms what "an abnormality of the splenium of the corpus callosum " means, or else why bother to tell you in the letter?
You should demand a follow-up appointment immediately. If necessary, ask your GP to write on your behalf. It's ridiculous to leave any patient with questions that could easily be answered by the right person.
I had a reply from the U.S. today and they confirmed there is a legion in the splenium of the corpus callosum and said that it is typical of cerabral ALD but as there was no gadolinium enhancement showing its not active and he advised that I have scans every 6 months as it may become active! Hopefully it won't?
I actually have three now. Occipital lobes and left frontal lobe.
So far, so good. I am still up and running. How about yourself? How often do you have MRI's nowadays? How is your brain? Any more lesions? Do you do anything for your brain health?
I am scheduled for every six months now. I used to hate having an MRI, claustrophobia is me. Like being buried alive. I am alright now, close my eyes and absolutely never open them.
My neurologist is already hunting down a bone marrow donor for me. He is ready to rock and roll. Milk my insurance.
I'm good thanks, I have scans every 6 months, I hate them I take Valium and I wear a eye mask not fun being in there for an hour! I've also seen a BMT specialist and he said I'd have no problem with a donor as I'm a common blood group? Hopefully it won't come to that? There's one lesion in the centre of my brain and it's been stable for a few years now, I'm hoping it's been there since I was I child and only now showing on the advanced scans?
I'm not taking anything but I'm on the minoryx trial and that gets through the blood brain barrier? Fingers crossed it will be a treatment for all of us in a few years? It's doing great for my pain relief!
The Minoryx trial is really helping with nerve pain? That's the first I've heard of that type of result from this trial, but it's fascinating. Any more information you can provide about this would be appreciated.
My pain is usually worse through the winter and the only thing I used to take was vitamin d3 but this year I haven't taken any! I think that most men with amn don't suffer with neuropathy perhaps that's why it hasn't been noted? I'm one that used to suffer quite bad! My wife noticed straight away that I wasn't complaining! Usually when I go to bed and when I'm relaxed that's when it gets worse! I don't even have so many spasms now! I sometimes get aching legs but I think it could be the fluid retention?
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