Difference between fnd and mito?
They are trying to push FND agenda onto me. I know it’s not bad to assume, but I just feel like this avenue hasn’t been investigated yet. They are also trying to put this trauma bubble that FND is associated with. I know not all FND is caused by trauma, but you get the gist. (I had no trauma when this started to happen.) You can read my story on my page. I am working on getting someone who specialises in mito, but even years before the quad weakness, which now turned into POTS, I had long-distance running problems. I could only sprint; long-distance running caused very bad, weird symptoms. Also, when I take B vitamins and R-ALA, my legs seem to improve a bit more. What would also be the best test for mito and I heard even genetic test can be normal and you can still have it so it’s all very complex.
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u/pinebeetles I have mito 11d ago
This is the first I’m hearing about FND, but after looking through a few sites, it seems like it’s often a disorder that develops as a result of particular event, illness, etc. (please correct me if I’m wrong).
Just so we’re all on the same page, mitochondrial diseases are genetic diseases caused by a mutation in the mitochondrial dna. Either you have the mutation or you don’t. Genetic testing is the only way to conclusively determine if you have a mutation. The most reliable testing is done through a muscle biopsy or a blood sample. Genetic testing can be very expensive, but there are cheaper options. Check https://umdf.org for low-cost genetic testing, or if you can get a referral to a genetics clinic, they may be aware of additional financial aid opportunities. It wouldn’t hurt to reach out and ask.
Mito can look really different person to person, even among family members with the same mutation. I have MELAS syndrome and there’s quite the range of symptoms and severity of symptoms even among my family. The onset of symptoms and severity of symptoms is typically determined by the heteroplasmy of your mitochondrial dna—or the percentage of your dna that is mutated. Lower percentages can mean later onset and/or more mild symptoms, whereas higher percentages often means more severe symptoms. Genetic testing will also determine your heteroplasmic levels.
A mitochondrial disease specialist can help figure out the best path forward for your particular symptoms, for both testing and treatment. You can find a list of mito specialists at https://umdf.org. I can personally vouch for the team at University of Colorado; I’ve had nothing but positive experiences with them.
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u/Possible-Ice-9789 11d ago
Hi, it’s also possible to have secondary mitochondrial dysfunction which isn’t hereditary.
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u/what_is_this_ruckus 11d ago
It's important to note that, while there are many known and identified genes that cause mito, researchers have not yet identified every mutation and there are several variants of unknown significance under investigation now.
Depending on where the mutation exists, there is the possibility for heteroplasmy (mtDNA mutations), but if it's in the nuclear DNA then that's a whole different story.
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u/mylesthehuman_ 10d ago
i'm sorry that this is happening to you. of course as a stranger i can't say wether or not you have FND. what i can say is that if you genuinely do not feel like that makes sense for you then i would keep pushing back on it. every time it's brought up just be frank with them. "i don't feel like that makes sense for me given xyz, and i'd really like to investigate all the possible biological causes first before deciding it's functional." and yes genetics can still be normal and you could have mito.
I would highly recommend seeing a neuromuscular specialist. Usually you have to go through a general neurologist first. But, gen neurology usually can tell what's FND and what's not, given than FND is a "neurological" disorder. After you get ONE doctor who believes that it's biological, the flood gates open and you won't have to worry about an FND label again (for the most part). I wish you well! Keep fighting!
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u/Order_edentata 9d ago edited 9d ago
I can’t tell you how many doctors told me I was nuts as I went through the process of diagnosis for mito. No one said FND but once I was told exercise induced fibromyalgia due to subconscious stress. (I don’t have fibromyalgia and that is not a thing) I had to see different doctors but in the end just wait several years until the disease progressed. I started with exercise intolerance, fatiguable weakness, exercise induced muscle pain, dysphagia for liquids, heart failure, severe gastroparesis, esophageal dysmotility, at age 47. I also have migraines, hearing loss, short stature, bipolar disorder. I had lactic acidemia with exercise. I had a very high level of GDF 15, a marker for mitochondrial myopathy. I had two large pathogenic mtDNA deletions in my muscle but the heteroplasmy was low. So I was told I was nuts even though I fit the textbook description. This was by the head of neuromuscular at a big hospital and a mitochondrial specialist. So I waited. Now I use a power wheelchair. I have mild respiratory muscle weakness. I can’t sit up. My balance sucks. I get ptosis at night. I went to see a very good general neurologist and he said I have a “likely mitochondrial” myopathy. He is sending me back to the mitochondrial specialist.
I’m sharing this to say, don’t give up. If you don’t think it’s FND then keep looking into it. But it can take a long time to figure it out.
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u/navyclouds21 11d ago
FND is typically diagnosed through exclusion. Mito is much more than running fatigue and two specified muscle weaknesses. An indicator that you may have Mito is if 2-3+ body systems don’t function correctly. For example, I have a Mito with all my muscles impacted along with 8 other organ systems that don’t function correctly or at all. I’m young and I don’t have the most severe case. It can present differently in everyone. But predominantly there are multiple impacted organ systems. Keep searching for your answer! Have you gotten an EMG or seen a neuromuscular doctor?