I recently noticed a search for AMN on YouTube brings up many videos of myself (along with other content on my YouTube channel, which is lottery/gambling related. It's a hobby haha). I started putting out videos last year talking about AMN and how it started to affect me. It definitely has helped me use it as an outlet which may also get to others who have AMN/ALD as well. I have met many people who show up on my videos or during a live stream who are confused about the condition because their medical professional also is confused. I try to lead them here and other Facebook groups. It definitely is an option to get it out there and I encourage others to do the same as it makes us one big voice.
Well done, Ken. I watched your videos and your optimism and positivity shine through. You are a great advertisement for how to deal with AMN, especially for younger AMN-ers. Thanks for taking the trouble to make us aware of these.
Thanks Chris! I also try not to cover up any "TMI" moments of AMN as these things happen. As I referenced "my pee pee issues", hey you have to put it out there. Like most things in this community, including this forum, it's good for people to be able to relate.
Well done, indeed! Thank you for putting this - you - out there. There really isn't enough information for the community, especially in terms of our day-to-day!
I have neuropathy in m legs. Medications doesn't help. Working out makes me feel so much better. Has the trial medications helped with your nerve pain? Some days are worse than others for me. I'm afraid since I'm not in a clinical trial, my nerves are being damaged continuously.
Hi Klorda! I have noticed some slight changes from the "fire in the legs" and leg cramps at night since I started the trial. I'm obviously hoping what nerves are left the trial drug is helping preserve, but nobody will know and time will tell. I am taking daily doses of Gabapentin and I skipped doses when I was on a business trip and I noticed nothing different. I asked if I could stop taking, due to the trial they want to keep it constant. (Which makes sense to keep the results true.)
I must admit I didn't give Gabapentin or CBD oil much of a chance. I felt loopy from both. Whether that was psychological or not, I don't know. I feel like taking something right now. Can I ask if any of your relatives were in a wheelchair?
Luckily I didn't have any side effects from it, but again not sure if it is doing much these days. My oldest brother was in a wheelchair, but that was when he developed cerebral ALD. (In which he passed about 6 months after he went into the chair.)
My nephew has AMN - 29 years old. He is currently in a trial at Kennedy Krieger. No cerebral involvement yet. He has bladder, sexual, gait and leg issues at this point. However, the drug he is currently taking is supposed to stop the progression of the disease. Let's hope it works.
Hi Ken, watched all of your videos today. I really admire the way you approach things and your general outlook on life; it’s really inspirational. Thank you for making these!
I’ve had the urodynamics test done 3 times so far as “pee pee issues” are my worst problem in my opinion. First 2 went over well minus the annoyance of things being inserted! My third was the worst for some reason! Everything went well until the last catheter to empty all fluids from the test! It was me and the nurse that was emptying my bladder in the room. 20 seconds into the emptying I totally passed out! I was sitting up on the “toilet table” and woke up laying down again with 15 doctors and nurses surrounding me. Not a very pleasant situation!
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More controversial medication. I still don;t care if you are anti.
Urinary Urgency: life becoming intolerable