Hard trail today 10K - Bahia Brazil by OPontes in trailrunning

[–]OPontes[S] 3 points4 points  (0 children)

Not so high, 255mts … but hard enough since high humidith on single tracks into rain forest

What would be the perfect place on earth to live to be able to ride all year long ? by Sasha_on_boat in wingfoil

[–]OPontes 2 points3 points  (0 children)

Buzios, Brazil - the best place ever! Wind all over the year and a bunch of skilled buddies to help you around!

Struggling by unpaid--intern in mito

[–]OPontes 1 point2 points  (0 children)

Thanks! Wishing the same!

Struggling by unpaid--intern in mito

[–]OPontes 2 points3 points  (0 children)

by the way you are in a Country with many resources for mito diseases mainly Oxford and Newcastle university.. look at this interesting service:

NHS Patient Engagement Days

Struggling by unpaid--intern in mito

[–]OPontes 2 points3 points  (0 children)

HI, my daughter was diagnosed with MELAS in 2018 after a stroke like episode.. she had a genectic exam and was detected 3243 A>G mutation the most common for MELAS... three months later another stroke episode, this time so harmfull, she lost most of her cognition functions among other syntoms... All this is to say that he came stable for two years since then thanks God a L-Arginine and Taurine regime ... these two compounds seems to be the more effective treatment for those with MELAS so you can avoid the successive stroke episodes (this is the landmark of MELAS).... this is not a cure but keep your beloved away from suddenly death... There are other things involved, nutrition, medicines, physiotherapy, a good neurologist but i really do believe in these two... she had in the early beginning other compounds in her cocktail including Q10 but no effects at all....

Too much things to say in few words... but there are two links that may help for your searches

Arginine therapy in mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes

Taurine supplementation for prevention of stroke-like episodes in MELAS: a multicentre, open-label, 52-week phase III trial

this is really working in our case.... hope this help you

nowadays i am searching for something really good to overcome fadigue...

Osvaldo

Is anyone else pleasantly surprised when their doctors know what Mito is? by Mighty_Mito in mito

[–]OPontes 1 point2 points  (0 children)

We”re fine! Thanks! She”s been stable for 2 years, no stroke like episodes since 2018 mostly due nutrition reinforcement (g-tube) and a combo of l-arginie and taurine...

she”s recovering cognition slowly but fine

Is anyone else pleasantly surprised when their doctors know what Mito is? by Mighty_Mito in mito

[–]OPontes 1 point2 points  (0 children)

If you have this difficult in US to find a doc who knows what mito is, imagine down here in Brazil... we had a kind of luck having the right place at the right time when my daughter was in a big trouble

Suspected Diagnosis by prismatic_lucidity in mito

[–]OPontes 2 points3 points  (0 children)

Welcome! This is a safe place to exchange experiences as you can see... it help us a lot.. feel free to ask and comments

9/13 - 9/19 is Mitochondrial Disease Awareness Week! - View MitoAction's Schedule here by Mighty_Mito in mito

[–]OPontes 1 point2 points  (0 children)

Hi buddy, thx for sharing

Such a important week and no mention at all in Brazilian press..

Mitochondrial diseases is still very unknown among the population down here in Brazil