Originally Posted by bny806
Geode- I don't know much about mitochondrial diseases, but I have had a few people mention that to me.. that it can involve drooping eyelids too.. what is the treatment for it, if there is one? prognosis etc? hope you find answers soon!
I am still in the early learning phases myself. I've come across it from time to time, but doctors have been more reluctant to consider that possibility than even MG and HKPP. I've been told by doctors: "You have to get it as a child" (false) "It doesn't fluctuate so much like yours does" (false) and "This just doesn't look like mito, it can't be" (based on what???) Because there's not really a good treatment and diagnosis often involves a muscle biopsy, I guess I've buried my head in the sand on this diagnosis. The subject just came up on the HKPP forum again, with a link shared to a site I'd never seen, so have been revisiting this possibility.
From what I've seen so far, it is mostly "managed" with vitamin and cofactor therapy, symptomatic treatment, and lifestyle modifications. Although, based on the video that Alice shared (thanks Alice!), I think there is potential for more than that. If you want to read up on it, check out mitoaction.org and umdf.org
Some key points I've learned in the last week or so:
They used to think mito affected about 1 in 50,000 to 100,000 people, but now they say the incidence is 1 in every 2-4,000. One source says that 1 in every 200 people carries a genetic mutation that has the potential to develop into mito disease.
All cells except red blood cells have mitochondria, and mito disease can affect many different body systems. One source says, "Think mito disease when 3 or more organ systems are involved." I have tachycardia which the cardiologist believes is POTS but we're doing a 30-day Holter monitor just to be sure, GI symptoms, muscle weakness, and brain issues with motor control/spasms.
As I've been reading through this MG forum, there's been a couple of people with POTS. One person said she has POTS instead of MG; one response to that was that POTS wouldn't cause ptosis. Maybe not, but Mito can cause both POTS and ptosis (as well as other weakness resembling MG). Additionally, at least one form of catecholamine imbalance can cause both dysautonomia and ptosis. How many things can go wrong in a human body? It's mind boggling that anyone's healthy.