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Friedbrain

Mitochondria Dysfunction?

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Sometimes total flakes make ginormous statements and it's all hokey, so I'm just asking for opinions... Does anyone know anything (solid) about the legitimacy of mitochondrial dysfunction in relation to dysautonomia (and other related problems)? The theory, if I understood correctly, is that mitochondria are critical for energy production so dysfunction can cause semimonthly unrelated problems. Brain, heart, muscle...all high users of energy storage. What I found interesting -and what initially drew me to the idea- was a site that described my bladder problems to a T! Digging came up with a relationship between mitochondria and the brain (I've had probs there, too) and dysautonomia. Almost everything and the kitchen sink with little solid evidence, though, so then I started becoming suspicious. And I don't understand how symptoms (problems with mitochondria) could/would fluctuate.

Thanks for thoughts!

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It is interesting that you bring this up. I am working with a Neurologist who is a sleep specialist. I have an appointment with him next month to get my results for possible hypersomnia (excessive day time sleepiness). I have been able to access my blood test results and I am Carnitine deficient. I eat a plant based diet, but it doesn't explain the deficiency. There is a link between Carnitine and Mitochondria, which I am still doing a lot of reading about. I am curious to see if anyone else has a Carnitine deficiency. I am also looking forward to speaking with my Neurologist. He does a lot of research, and has traveled to other countries to better understand issues like hypersomnia. He is seeing more Dysautonomia patients in his office, and has been working with other doctors/researchers who specialize in the autonomic nervous system.

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There have been some connections in the literature of patients with Mitochondrial dysfunction and POTS. There are many mitochondrial illnesses, it is sort of like saying could a genetic illness cause POTS as there are many genes in the mitochondrial genome, and many regular (nuclear) genes that cause mutations in the mitochondria. There are very few mitochondrial specialists.

I saw one several years ago and he gave me a diagnosis, then later said it was not correct. I had my entire mitochondrial genome done, without illness, but still had short and long chain fatty acids in my urine in addition to other mito. indicators, so they went back and did a punch biopsy and sent it to Baylor. The results showed a disorder called an Electron Transport Chain Complex 3. It was supposed to be progressive, but has not progressed in the ways it was supposed to, though I have recently gotten sicker in other ways. I tend to think the diagnosis is irrelevant.

Also most mito. diagnosis have little cure, just some supplements you can take. My thoughts is one could spend a lot of time pursueing a mito. diagnosis without anything that can clearly help POTS. But that is just my two cents based on my experience.

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lfreem02, doesn't carnitine come mostly from meat sources? So I would think that could explain the deficiency. Anyone feel free to correct me, as I'm just going off the top of my head here.

Friedbrain, may I ask what your bladder issues are? I have been having trouble in the last six months. Basically, I have to really concentrate to begin urinating, and then it wants to stop often, then I have to reconcentrate to start it back up, etc. It can take me up to 2 minutes sitting to finally feel like I am done, instead of maybe 30 seconds like my old normal.

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Thank you for the thoughts on mitochondrial disorders. It doesn't seem like the research is very complete at this point, and maybe there's just a lot (too much?) of speculation.

Sue-same here. Mostly difficulty voiding, sometimes initiating, often with completion (i have to squat to finish), slow stream.. Usually worst ten days around ovulation, worse in the middle of the night and early morning. After reducing my steroids 3ys ago, I started having trouble not even sensing a full bladder and/or producing urine. At my worst, when I had all sorts of MS like symptoms, the uro consult (in the hospital) said it was neuro related. Over the past 12ys, I have bounced back and forth like a hot potato between uro and Neuro docs, neither knowing anything and telling me to see the other. Ugh.

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Sue1234 - it is a little more complicated than that. Meat is a way to get carnitine, but the body can still get what it needs when someone is a vegan or vegetarian. I have read posts on other forums that individuals are taking carnitine to help with Dysautonomia symptoms (gastroparesis, vomiting, and fatigue).

"Carnitine is an amino acid that is required for the transport of long-chain fatty acids into the mitochondria, the site of beta-oxidation of fatty acids. About 25 percent of the carnitine required by the body is produced by the liver and kidneys, while the rest is derived from dietary intake, primarily from red meat, poultry, fish, and dairy products. Most of the carnitine in the body is located in the voluntary and cardiac muscles.

The secondary form of carntine deficiency can arise secondary to metalobic disorders in the mitochondria. Blockage of metabolic pathways in the mitochondria leads to a build-up of acyl compounds. These compounds then bind to carnitine and the bound complex is then excreted by the kidney, causing carnitine levels to drop. Some of these mitochondrial disorders include cytochrome c oxidase deficiency, mitochondrial ATPase deficiency, and fatty acyl-CoA dehydrogenase deficiencies. In both primary and secondary carnintine deficiencies, increased dietary intake and supplements of carnitine can be beneficial. Although the exact mechanism is unknown, it is thought that flooding the body with high concentrations of carnitine assures that some carnitine are able to get into the cells."

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Friedbrain, I am very similar. Late evening and nighttime urination is the worst. I also have mostly lost the sense of needing to urinate unless my bladder is really, really full. I find myself sometimes wondering if I need to pee before I get out of my chair, and I will literally push on my lower abdomen to see if I "feel" like I need to go! All this at home, of course, not in public! I am just waiting for the day that I won't be able to urinate enough, and have to run to an urgent care. I have a gyn appt. coming up in a few weeks, so I'll ask my doctor if she has any ideas on why I'm getting like this.

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I don't feel like I have to urinate until I really have to go. I have to monitor how much I drink and go regardless of how I feel. There are times that I have strange pain in my hands when I have waited too long, and then it goes away once I use the bathroom. I have to be very careful with exercising, and I can't always retain complete control of my bladder. Fortunately, I don't have issues with emptying my bladder like the two of you. Do, you get a lot of infections as a result? It seems to be an unfortunate symptom of autonomic disorders.

Sue1234 - I am curious if your gyno. will have an explanation, or just say it is a nervous system issue.

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lfreem02, no, I don't get any infections(yet! knock on wood!). If my bladder gets over-full, I get tachycardia and the anxiety that goes with it. If I run and go to the bathroom, that feeling immediately goes away after I empty my bladder. When you mentioned your hands, that reminded me of my issue with tachycardia.

I will let y'all know what my gyn has to say. I have just figured it had to do with sympathetic/parasympathetic system problems, but I just want to make sure it isn't related to pelvic floor issues. I've even wondered about spinal issues, but I don't feel like going through the whole neuro/MRI thing just yet.

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Sue, I'm reading from my phone but I think several ys ago, we noted shared oddball symptoms then, too. Fwiw, the uro I most recently saw was a pelvic floor specialist who said that my pelvuc floor muscles were too tight and that I needed PT. Thing was....I was asymptomatic at the time! I did undergo therapy the first time but it did little good and when I saw him again, same thing. (My symptoms are in the middle of my cycle) and he couldn't explain it. I saw his notes-he'd adjusted my symptoms (round the clock retention) to fit his treatment plan, which is when I realized he was too arrogant to document that he didn't know (which he'd admitted to me privately one time but not the time in front of the resident). So be careful!

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Er I mean that he'd written that it was round the clock when it isn't. I did end up in the ER over this, soon after I started not being able to sense my bladder because I couldn't go in the morning, drank a bunch if coffee thinking I'd be able to go, and still couldn't....when I realized something was wrong, I pictured that I must be full if urine up to my eyeballs by that point iykwim. Pretty scary. My old uro then had me learn how to self catheterize. But fwiw..., as an aside....I now wonder if I'm even making enough urine at those times, as I started noticing that my urine sinks when I'm producing so little. I bought urine test strips from amazon-my urine is uber concentrated!!! So it may be more complicated, involving my kidneys! I don't understand it because it's not structural, since it can be normal.... :P

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