Anyone running with a Glycogen storage disease (or suffer from chronic muscle fatigue)?

Interested to hear from other runners who have GSD or similar?  I've not been formally diagnosed but my symptoms are very similar to mcArdles and i have spent over half my life seeking a diagnosis.   I've suffered from muscle fatigue for over 20 years. I'm still running but can only race up to 5km but right now only managing 1-2km training runs.  That being said, I am still able to run 1km reps in around 3:30 even though apart from the first 20 seconds i am in major discomfort and by the end, my lower legs screaming.   Anyway would like to hear from any other people out there who are still running despite suffering from GSD or similar and share some tips etc...
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