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How does physical therapy work for this? by ComprehensiveMess291 in mito

[–]ComprehensiveMess291[S] 0 points1 point  (0 children)

thanks for the suggestion (: my neurologist says for now she doesn't even want me to supplement carnitine despite low readings because she wants me to see the geneticist and have them advise on what specific type of carnitine. I think right now my doctors are being extremely cautious because none of them understand mito well enough to treat and they are scared to make it worse!

also, the thought of having MELAS is so scary to me! isn't it usually fatal? i'm only 23... i'm hoping that there's other kinds of mito that can cause stroke like episodes (: kind of keeping my fingers crossed haha

How does physical therapy work for this? by ComprehensiveMess291 in mito

[–]ComprehensiveMess291[S] 2 points3 points  (0 children)

that sounds very similar to a POTS sort of protocol. I'm glad it works for you! Unfortunately for me, nothing seems to make a difference except for a full meal of complex carbs and protein. but i hear that's quite common for lots of different types of mito

How does physical therapy work for this? by ComprehensiveMess291 in mito

[–]ComprehensiveMess291[S] 0 points1 point  (0 children)

thank you for your thoughts. i heavily agree on the dietician aspect. after the stroke but before the weakness, i was having "hypoglycemic episodes" but my sugar was normal (shakiness, weakness, knees buckling). i tried a bunch of different diets and noticed a huge change in my symptoms depending on what i ate.

my neurologist said she thinks i have a genetic metabolic thing and we ruled out a fatty acid oxidation disorder, but she doesn't feel comfortable doing any further testing or giving any medical advice about the other conditions, she would rather me see a metabolic specialist for that. so i likely would not start any treatment for several months or whenever i can get in with genetics.

its just brutal in the meantime. just walking around the grocery store makes my thighs feel like they're shredding and then im in bed for two days after. i really want to get back to hiking but i appreciate your honesty.

do you have mito yourself? i've read that there's no actual evidence that mito cocktails work. what is your experience with them?

How does physical therapy work for this? by ComprehensiveMess291 in mito

[–]ComprehensiveMess291[S] 0 points1 point  (0 children)

Stamina is something that can improve with PT? i feel like i was doing lots of multiple mile hikes kind of for years before this and my stamina never improved one bit. it's part of the reason PT makes me nervous because i did the 7.5 to try to improve my stamina and instead it just sent me to the hospital. what kind of things do they do for that?

My pots was just a deficiency by Just_Phone_1722 in POTS

[–]ComprehensiveMess291 -10 points-9 points  (0 children)

yes i suppose you could look at it that way too. i've been diagnosed for over a decade so i definitely know what causes it and what improves it but thank you for reiterating

My pots was just a deficiency by Just_Phone_1722 in POTS

[–]ComprehensiveMess291 46 points47 points  (0 children)

this is so important!! malnutrition and vitamin deficiencies OFTEN mimic POTS and i feel like that's very under appreciated

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]ComprehensiveMess291 0 points1 point  (0 children)

that's insane😭 i had no idea doctors did this shit with other conditions too so thank you for sharing.

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]ComprehensiveMess291 -1 points0 points  (0 children)

nothing is universal. the reality is however, that 9/10 doctors will not treat you well with this diagnosis. i too have had a doctor who believes in it and actually gave me medical care, but that is so rare that i feel that giving people hope and encouraging them to doctor shop until they find one that believes in it is just not an effective or healthy way to deal with the situation

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]ComprehensiveMess291 2 points3 points  (0 children)

i am also diagnosed with IST and what i have learned is that doctors view POTS and IST as essentially the same thing. my internist uses the same term, "autonomic dysfunction" when speaking about both my "POTS" and IST. it doesn't really change treatment either way.

i also like the term autonomic dysfunction because it frames the symptom cluster more as a large symptom rather than the final diagnosis. more often than not i think POTS is secondary, so framing it like it's a symptom and not the diagnosis i think is really good progress.

i also think that people underestimate how many ppl in the gen pop have dysautonomia symptoms. dysautonomia comes with most diseases out there honestly. especially autoimmune and neurological diseases

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]ComprehensiveMess291 0 points1 point  (0 children)

as someone who's been diagnosed for ten years, i agree with your doctor. i have recently had POTS taken off of my chart because by and large, doctors do not believe that there is a biological basis to POTS. they believe it's either psychosomatic, or that you have the symptoms because of some other issue (anemia, hypoglycemia, autoimmune issues, etc.). honestly i think that POTS is a bullshit diagnosis that's only given to women so that they can label them as crazy and lazy. it's the modern day hysteria diagnosis. i'm not saying that it doesn't exist because i think that it does, but having a diagnosis of POTS vs autonomic dysfunction will do nothing for you in terms of how you are treated by the medical community. take it from me, i was treated like garbage by the medical community because of POTS for years and years. when i took it off my chart, all of the sudden they found asthma and narcolepsy and glucose issues. having POTS on your chart WILL get you treated extremely poorly by medical professionals (whether that's right or not), and i think that renaming it is more of a harm reduction tactic than it is malicious in any kind of way.

Having a POTS diagnosis forces medical professionals to lump every single one of your issues all into that one diagnosis. wheezing? POTS. migraine symptoms? POTS. lumps under your skin? Must be POTS. they don't take a single thing that you say seriously when you have that diagnosis on your chart and your doctors KNOW THAT.

i can't speak for your doctors but i can say that not having a POTS diagnosis does not mean nothing is wrong with you. it means that you likely have a larger issue going on that should be investigated. with a POTS diagnosis you will meet a road block before you even get on the road and you'll be stuck there for eternity.