Recent content by Golden.

But how does triggering an attack by increased carb intake factor into all of this? I agree with the idea that the lack of eccentric muscle contractions are the root cause, but for me carb intake does also play a huge role. I can easily trigger an attack by overdoing it on the carbs (like 2000...

Very interesting! The highest I got Was over 80.000. At that point I wasn't able to bend my legs at all and my urine looked like blood. Don't even get me started on the pain... I had two one week long hospital checks stays at the Neurological department of the Uni Klinik Jena, but they never...

Hey, Thank you for letting us now! Are they sure this mutation is causing the issue? Is there anything you can do? Can you keep on cycling? I'm also German so I'd be interested in the full report for sure!

oh for sure, it might be entirely possible that their are different causes for the same symptoms, but I find the triggers oddly specific. especially that these attacks happens not during the initial exercise, but after a period of rest and that they are often triggereby going down the stairs or...

Check this link: https://rarediseases.org/rare-diseases/ryr-1-related-diseases/ and especially this paragraph: but then we already have someone in this thread who was tested for RYR1 and showed no mutation: one more:

Yes, AST/ALT were significant elevated too, but this is common in rhabdomyolysis. Calcium was normal. Going over my values again, what I find very strange is that I had Glucose level of 105 when I presented at the hospital - I hadn't eaten for at least 3 hours, probably much more, at that time...

Hi Craig, II thought about MH too, but it just doesn't seem plausible to me. If these episodes are due to MH, there should be more symptoms associated with MH present, like increased heart rate, fast breathing, stiff jaw and extremely increased body temperature. I have nothing of these and I...

I'm now struggling with this for over a year and can only hold it of by cycling at least every other day (doing ~500km each week in the summer, ~300km in the winter) and being very disciplined with my diet. My usually episode are pretty rough, but either I can get them to not come on fully by...

Please don't take NSAIDs before every session. They do more harm than good, and are in my experience completely useless regarding our condition. The only use they may have is to mask some of the pain when in the middle of a episode and you are trying to ride it out, which is possible, but not...

I agree, this checks out. I saw she got a facebook fan page. I'm not anymore on there. Maybe anyone on there could try to get in contact with her and ask her for more details regarding symptoms and management?

Did anyone ever have an episode despite riding every day? I was having mini episodes the last week which I could ride out but today I got hit very hard and had to stop riding after 1km. I've been riding every single day for at least one hour, but had the occasional recovery ride thrown in...

I never had dark coloured urine. My doctors said that doing sport while in an episode is the worst thing you can do. You have to rest and hydrate (3 liters per day minimum). Working through an episode by doing exercise wouldn't even be possible for me, I can barely walk once it's triggered...

I did all the things which should trigger an cpt2 deficiency attack and never had a problem. I did 23/1 fasting or omad for half a year. Never felt better in my life, energy levels were through the roof. Unfortunately it's very hard to maintain if you try to be somewhat sociable. I did very...

Yes, I agree. If it comes back negative, you can at least rule it out. As I said, the pain she is experiencing is the same we are experiencing. Rhabdomyolysisis a condition that can have multiple causes. When I was in the hospital they confirmed rhabdo (via CK levels and MRT) but couldn't find...

Hi, long time lurker of this thread, now I made an account. I had three episodes this year. All with elevated CK levels way above 9000. I also had three hospital stays were the checked me for everything (MRI, EMG, ENG, blood test, Ischaemic forearm test etc etc). Long story short, they couldn't...