I’ve found out that the drug they are trialling is amifampridine used for LEMS
Feeling a wee bit desperate. I’m finding my Jazzy Pride “shopping” Powerchair’s suspension is just not adequate with going over the very bumpy...
Thank you so much for your replies. I’ve always had nausea come and go with the ME. It’s definitely not from medication and gets worse and...
That sounds a great suggestion. I used to have ideas but these days my brain just doesn’t seem to work or think in the same way as it used to....
I’m just entering / experiencing OI hypotension, fainting, big black blobs in my vision on standing or delayed and then start to black out. I also...
Thank you so very much for this as I had no idea that this exisits. I have an appointment with my local NHS dentist and have emailed them. But...
Merged thread I have not been to the dentist since i got ME In 2006. I used to pass out at the dentist before I got ME and i now have severe ME...
Super thank you and do message me with any other thoughts as all info is useful. I had a bone scan due to a broken hip and then operation on 4...
I also note that most oxygen compressor hire places need a GP / hospital approval … can I ask if your GP helped with this? Also how long have you...
Can I ask where you hired the oxygenation compressor from and the model. Thank you
Hmmmm very very interesting …. How have you measured your blood oxygen to know you needed an oxygen compressor and may I ask how it’s made a...
I have a smart watch forerunner 255 I think vivosmart. I have severe ish ME since 2006, am 57 and in bed 2-3 days a week with about 2 hours of...
I broke my HIP on 3rd January and am already way behind on recovery. I’m looking for help on potential timelines on ME recovery times. The...
Unfortunately on 3 January I fell whilst at home alone, took 90 mins to turn on floor and inch to phone to call my husband. Anyway I’d badly...
Merged thread I would love to know which wrist heart rate monitor has audible heart rate alert zones plus constant heart rate display if possible...
Thank you for the advice and replies. My doctor just asked me to try nortriptyline but nothing is softening or alleviating the brain stuff ......
I seem to have weeks going into months of brain inflammation which is horrendous. My brain feels inflamed which at night particularly seems to go...
Excellent explanation of the LP ... I remember when I first heard of LP and remember thinking to myself that it also can mean linguistic...
Michelle, I really feel for you but I too put all my eggs in one basket with rituxamib whatever my brain said. I’m into my 11th year and...
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