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Mitochondrial myopathy

aquariusgirl

Senior Member
Messages
1,732
@pattismith ....Patti I am having big potassium problems. Looks like I have been wasting or dumping potassium for years ( urine tests ...hair tests) but ADH is zero so taking potassium tanks sodium.

Also seems it’s common for people on oxalate protocols to lose potassium.

Not sure how to proceed.
 

RYO

Senior Member
Messages
350
Location
USA
@RYO there is so much different forms of Myopathies, both acquired or genetic, I hope doctors will find what happens to your muscles;

Is Gammaguard the same as IVIG?

Did you tryed thiamine injections?
Gammagard is immunoglobulin. It can administered IV or SC.

I have not tried thiamine injections.
 

pattismith

Senior Member
Messages
3,931
I have myself something looking like a myopathy.
When I was young, it was mainly muscle fatigue, but after antibiotics (Macrolides and tetracyclines), it worsened a lot into fasciculations, weaknesses, heavy legs/arms.

I managed it with mito cocktails and monitoring potassium was helpful to tell I had actually an issue with it, so I took potassium supplements. I also take thiamine injections.

So I still don't know if I have a mitochondrial problem or a channelopathy, but my cocktail allowed me to help my muscles and the fasciculations to disappear, and weakness as well.

Some channelopathies need special EMG for diagnosis, so the standard EMG is not always enought, and reaction to blood potassium variations need a monitoring to be detected. (a single fasting blood test is not enought)

@pattismith ....Patti I am having big potassium problems. Looks like I have been wasting or dumping potassium for years ( urine tests ...hair tests) but ADH is zero so taking potassium tanks sodium.

Also seems it’s common for people on oxalate protocols to lose potassium.

Not sure how to proceed.

the question would be: how do you know you have a problem with potassium?