Recent content by sisu

Hi everyone - sorry it's been a while, I came to see if there were any updates here and it seems like I have missed out on a lot! I wanted to specifically reply to the post above from @NaturallyDriven . I have done lots of research and thinking of what the issue here is and have come to the...

Hey all (and especially hey to all the new sufferers, sorry that you are here but welcome!!) - I had a decent 5-6wk stretch without symptoms. I did a 3wk training camp (26-28h/week swim-bike-run-gym) in January with no issues. Body works fine under constant load. Came home and took a bit easier...

Hey! Yep, I had to take it easy for two weeks post-biopsy due to the stitches but I have recovered well and have had a solid three-week block of training now without any muscle symptoms. Thanks for checking!

Hey all, Updates: So far, nothing pathological in the biopsy... BUT They found slightly elevated levels of some medium-chain acylcarnitines in my plasma, which could be an indicator of fat metabolism-related issues. Now, they are screening my urine for organic acids. I don't know what this...

Hi, Thanks for doing all this work. I had my muscle biopsy 11 days ago and here's a short(ish) update: Well first off, haven't got any results back yet. They said it might take 2-4 weeks depending on what tests they run with the samples + the Holidays, so I'm not expecting to hear anything for...

Hi! Yes, exactly. But I think that's why my neurologist suggested it would be something more "rare" and "less serious" compared to many of the well-known myopathies, which typically have the symptoms occur all the time and particularly with any activity (and not like in our case when it is only...

Hey! Ugh sorry to hear about your accident. I know that feeling of not being able to sleep on the f*cked up shouldero_O Also, you are worthy and good at any age. I'm approaching a milestone birthday myself too and it has made me feel nervous too but it's okay! Just a different phase of the...

Hi everyone, Thought to write in since I read all the posts this summer and came to see if there are any updates and since the conversation is still going... About me: 29-year-old Caucasian female. Former runner turned triathlete at 25 years old. Ran at D1/international level, now racing 70.3s...