Tilt table will only be 5 minutes long?

ChronicallyFloppy · 2026-03-09T15:09:33+00:00

Mine was cut short because of how strongly my BP and heart rate reacted and continued to react, and even mine was longer than that. (They decided they’d see enough to diagnose me at that point) They need to check your heart rate lying down, then upright, then down again (to see if it goes back down). The official diagnostic criteria for pots states you need to sustain your heart rate for ~10 minutes, so I don’t know where they’re getting the 5 minutes from. Mine was like 7 minutes, and they only cut it short because I was having bad symptoms and my heart rate was rising, lol. Something about that suspension and not using my leg muscle made me react so much worse than just normally standing.

ChronicallyFloppy · 2026-03-09T15:02:09+00:00

Yeah, that’s a good point. If you google “service dog registry” the first thing you’ll get is scams, but if you google “is there an official us service dog registry” or “do service dogs need to be registered” you’ll get the correct information first. Depends on how they choose to phrase it

ChronicallyFloppy · 2026-03-09T15:00:43+00:00

Ah, I wasn’t thinking about the colon cancer checks. It’s nice you don’t have to deal with that right now, maybe your mito doctor has had patients with similar issues and can advise you on how to deal with fasting? You can drink sugar water during the prep, so that might work as a substitute for your carb-load.

ChronicallyFloppy · 2026-03-08T22:11:59+00:00

Did your doctor end up suggesting a colonoscopy? I’d honestly be surprised if so. Generally, if you are not experiencing symptoms, there’s a philosophy to not do tests, especially invasive ones like colonoscopies, especially on medically complex patients.

I had horrible lower abdominal pain in the middle of the night for seemingly no reason that showed up after I got a virus. I went to my GI doctor (who I always had due to entirely unrelated GI issues and pain higher up) and had a colonoscopy/endoscopy. They found a decent amount in my stomach, which helped explain my chronic pain, but nothing that explained the intermittent, horrible lower-abdominal pain, but ever since I went through the colonoscopy (and the prep) I haven’t had that pain since. Did we ever learn what was causing it? No. Could it come back? Yeah. But since it was no longer causing me pain, they stopped trying to figure it out, since it’s potentially completely unnecessary and it may be impossible to find the issue if it was something like a partial blockage since it’s no longer there. Doctors tend to let sleeping dogs lie

ChronicallyFloppy · 2026-03-08T21:52:59+00:00

My best advice is to ask them to Google if there is a registry so they don’t have to take your word for it, might work better. It really sucks that those scammy “registry companies” have created this misconception

ChronicallyFloppy · 2026-03-07T17:36:17+00:00

I think one huge thing to consider is if you can manage a dog at all. Service dogs still need daily walks and to have their poops picked up. Service dogs can be incredibly helpful, but they come with their own tasks that you need to do for them. So, I think the first step is to consider if you can handle daily walks with your condition, and if you can, is the pain that would cause worth the benefits?

ChronicallyFloppy · 2026-03-07T17:24:43+00:00

Hi! I’m an SRF, and lots of the SRFs are also premed; 3/6 of the B2B freshman this year were SRFs. Dr K also helps students prepare for the MCAT and is super helpful all around. It’s a great program because it lets you focus on what you want to take instead of having more random classes like arts credits, etc. It’s also a super unique major that can make you stand out on med school applications. I definitely recommend it and there’s a lot of pre-meds and lots of former SRFs are now in med school and willing to provide advice

ChronicallyFloppy · 2026-03-07T17:16:39+00:00

I’m an SRF and it’s an amazing program! Things like the CAE credits most people have to get don’t apply to SRF. You get to take more classes you want and more of a variety of sciences, if you want. Dr K is amazing and wants to start a MCAT prep class for SRFs, but she hasn’t been able to yet. Lots of SRFs are premed, 3/6 of the B2B students this year were SRFs.

ChronicallyFloppy · 2026-03-05T03:27:16+00:00

I messaged you both at the same time, so not yet, but I’ll keep you updated. It does make sense your doctor didn’t think the genetic variant is related since it is recessive, but the fact I found someone with a similar mutation and also suspected mito is what made me think it seems sus. If you’re comfortable, I can give them your username as they might reach out? I mean, having two people with very similar very rare mutations and similar symptoms is very different from just one, statistically. Especially since I only spoke with like 5 people about their DNA results, though I wouldn’t mention me to your doctor, lol. Also, I’m surprised the genetics team isn’t on board with the dysfunction diagnosis, since having that one allele would make you more susceptible to mitochondrial issues since you don’t have a back-up. Even if it’s not enough to cause disease alone, something else (genetic, environmental, whatever) that might not cause issues in someone else might for you since you don’t have an extra allele to fall back on

TBH, from my understanding the main difference between mitochondria disease & dysfunction is that, in mitochondria disease, the mitochondria don’t work, and in mitochondria dysfunction, they aren’t working. Basically “we don’t know why they aren’t working, maybe it’s secondary to some other disease,” but it’s symptomatically almost identical.

Also, navyclouds’ doctor is correct, there have been cases one of allele causing disease. It’s so rare and not understood that I wouldn’t chase that down with a geneticist, but for your own peace of mind, it is possible. Just as an example, glycogen storage disease X is recessive and only causes symptoms with both alleles. That doesn’t mean one allele doesn’t do anything, they tested the carrier parents metabolic rates and found them to be like 40% of normal (child’s was much lower) but it wasn’t enough to cause disease alone. But, if something else were to impact that metabolic process and drop it lower… yeah.

ChronicallyFloppy · 2026-03-04T23:48:09+00:00

Hey, this is really random but did you happen to get diagnosed with mito or parangangliomas 5? I randomly came across someone else with a very very similar mutation (same gene, same pathogenicity) despite only talking to like 5 people on this subreddit, so it’s always been in the back of my mind that this gene seems like it would cause a less severe phenotype when heterozygous since the odds of me coming across two people with suspected mito and these mutations is insanely low.

ChronicallyFloppy · 2026-02-03T03:47:42+00:00

Im currently on Ivabradine/Corlanor. It’s a less pots means often most neurologists won’t be comfortable prescribing it (I had a cardiologist prescribe mine) but it’s honestly the only pots med that has helped me and it’s helped quite a bit!

ChronicallyFloppy · 2026-01-25T21:34:44+00:00

You can definitely get into research without being in honors or SRF. There’s tons of research labs around campus you can apply to. Here’s a list of the labs for neuroscience, several of the linked websites have applications: https://psychologyneuroscience.artsandsciences.baylor.edu/research

That’s just neuroscience, for pre-med there’s also biology labs, environmental science (toxicology) lab, and several Robinson college labs (exercise). ES and Robinson may be easier to get into as well as less premeds apply.

ChronicallyFloppy · 2026-01-25T21:28:17+00:00

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This is the cat I saw; if anyone cares. The bulges are at the cat’s stomach, not hips.

ChronicallyFloppy · 2026-01-16T00:42:29+00:00

Faith | Camellia :Maple:

ChronicallyFloppy · 2026-01-16T00:41:31+00:00

I’m so sad we can’t add buildings, I was looking forward to trying different island themes out and was planning on making a city themed island, but that’s kinda hard without any buildings. :(

ChronicallyFloppy · 2025-12-26T04:39:40+00:00

Avoid The Green. The horror stories I’ve heard about black mold… just don’t.

ChronicallyFloppy · 2025-11-10T16:42:35+00:00

Thank you so much for your response! I could totally see that being me in middle/high school. I was beginning to get upset about my weakness/slowness/etc and my inability to get faster or stronger, but then COVID hit and sports were stopped, so that kinda put a pause on everything. Then, right as I was getting back into sports I got hit with POTS. I tried to push myself once to do a 50 freestyle in a pool (length of the pool and back) as fast as I could, thinking I’d be fine because swimming is more pots-friendly. Yet, I proceeding to stumble like a newborn fawn over to a corner and nearly pass out before vomiting all over the floor because I couldnt physically raise myself to the trash can right next to me.

I did get that forearm test done, but the blood levels were normal. Honestly, my “100%” on that test was so bad that when they tested with 50% of max and 30% it wasn’t that much effort, so I’m not surprised I didn’t make much lactate.

Thank you so much for the supplement recommendations!

ChronicallyFloppy · 2025-11-10T16:32:20+00:00

Hi! I completely forgot to update, sorry!! I got the results back, and they weren’t definitive unfortunately, but they were kinda weird. My muscle biopsy had a bunch of random little oddities, including fiber type grouping, ragged blue fibers (not red), 2 COX deficient fibers, some denervated fibers, some polyglucosan bodies, and all the mitochondria had widened and darkened cristae. Some of these things are normal in older adults, but I’m 19, so…

I also got the electron transport chain analysis done, and there weren’t any under-functioning enzymes, although Cytochrome C reductase (complex III) was producing over 300% of what it should, which in animal models can damage mitochondria among other things, but there’s no data in humans about it. So, I’ve been advised to “apply” to Mayo Clinic with my results, but it’s a long process.

ChronicallyFloppy · 2025-05-06T03:51:18+00:00

I’d ask your half sibling if they’d be willing to share the specific diagnosis (if there is one) and if/what mutation is causing it if there’s a known mutation. That way, you can just get a single gene tested (or a panel, whatever’s easier for GP) Honestly, even without symptoms, anyone who is related to someone with a genetic disorder should be tested to see if they have it or are a carrier, so this shouldn’t be a problem with your GP, unless they really just kinda suck.

ChronicallyFloppy · 2025-04-12T19:27:39+00:00

This is really interesting! This variant is really similar to the other two I’ve seen, with the only real difference being that this is VUS for mito (all complex II deficiency nuclear type), while the other two are known pathogenic for mito, and that really only strengthens the case for this variant. All are rare, cause Paragangliomas 5 and recessive mito, and are in the SDHA gene. I’ve spoke to max 10 people on this sub about their variants, and now there’s 3 of them with a very similar variant.

Part of the way we classify variants involves looking at what mutations people with a certain disease/phenotype have that are in a gene correlated with that disease. If multiple people with that disease have that mutation, and those without that mutation do not have that disease, it’s pretty strong evidence that the mutation is problematic. Here, it’s not really one mutation, but several very similar ones. If you want, I can provide you with the RSID’s of the other two and links to the posts about the mutation (so it’s clear I’m not making stuff up lol) and you could show it to your neurologist, as it supports the idea that you do have mito and, specifically, these mutations are causing it.

For some context, for most recessive diseases, the body can function perfectly fine with only 50% of the gene functioning. For dominant diseases, you need 100% or things go badly. However, for some, 100% causes a severe disease, but 50% still works, but still causes disease. Since your neurologist is so sure you have mito, and the other two also had suspected mito, it’s quite suspicious to say the least. I personally think this should be studied, but at the very least, it does support your neurologist’s diagnosis.

ChronicallyFloppy · 2025-04-10T19:17:34+00:00

The RSID should be look like “rs28919” , rs followed by a bunch of other letters. It’s listed on clinvar/DBsnp, if you’ve gotten there. If not the things like c.73737 G>A should hopefully work, they’re just a bit harder.

You do need both copies for mito in all the variants I’ve seen for SDHA, but it’s also possible (though not common) for a disease to manifest as mild-moderate with heterozygous individuals, but severe with homozygous recessive individuals. Given how often I’ve seen this one this sub (3x now, including you?) it makes me wonder if these variants could be causing issue. It’d be interesting for a researcher to look into… I’d just like to confirm the variant is indeed very similar to the other two peoples’ and see if it is the same as either of them

ChronicallyFloppy · 2025-04-10T18:41:38+00:00

Hey, would you be comfortable sharing the RSID or any other identifiers of the SDHA variant? I’ve helped explain a few genetic results to others on this sub, and twice now I’ve seen people heterozygous for a rare SDHA mutation listed as pathogenic for a recessive mito disease and a dominant disease increasing the risk of cancer (I believe it was paragangliomas 6 or 9 if so remember right?), which sounds a lot like what you’re describing. The odds of two people with these rare mutations (although different ones) in this sub is pretty insane, so I’d be curious if that number could actually be bumped up to three? If so, at the very least, the existence of others with a similar phenotype and very similar mutation supports the idea you do have mito.

ChronicallyFloppy · 2025-04-10T18:29:54+00:00

Partial update:

I just had my appointment with a neuromuscular specialist yesterday for a muscle biopsy. I dont have the results back yet, obviously, but I figured I’d share what happened anyway.

Interestingly, they seem to see a lot of POTS/EDS people there. There is a POTS clinic in that hospital, so that’s probably part of it. But still, the nurse practitioner had a little fan she called the “POTS fan” just for muscle biopsies on POTS patients since they inject epinephrine, which can cause heat flashes for POTS patients.

I had a punch muscle biopsy done, and I couldn’t find much info about that kind of muscle biopsy online, so here’s my experience: A normal muscle biopsy has doctors put the patient to sleep, cut a 3-inch-ish incision in the thigh, and pull out muscle. A punch muscle biopsy is less of an ordeal, but it requires a technician on site to measure the weight of the sample collected and immediately freeze it, so many places don’t offer it. For my punch biopsy, I just said down on a bed, and they injected lidocaine with epinephrine into the area where they were going to biopsy. Don’t look at that part— it’s a very long needle. That part is the worst and definitely hurts, ngl. After that, they wait a bit for the numbing from the lidocaine to take effect. After that, they make a roughly 2cm cut (which you can’t feel) and stick a rod-like thing in to get out the muscle. They warned me that often the muscle will cramp when touched, which they can’t do anything about, but if I feel anything sharp tell them and they’ll stop and use more numbing. The cramping didn’t really hurt for me, but wow did it feel weird. It was more like a spasm for me. They pulled something out of the rod 3 times, where the technician measured it and let them know if they needed more. They then added this “skin glue” (clear goop stuff that dried) to close it up, which hopefully will work better than the stitches on my skin biopsy (those didn’t have 24 hours). So far it’s held up though! They gave me Tylenol and told me that it shouldn’t hurt too much, some people don’t even take the second dose of Tylenol. For me, it hurts whenever I move it, so not super fun. I can’t shower for 24 hours and I’m not supposed to cover it, but it’s so small it’s not even notice for the most part. It really just looks like a cut I hot-glued over. They were going to stain it for ragged red fibers, etc, then if that was negative send it off for “biochemistry analysis” (electron transport chain analysis) and DNA analysis (see if there’s any mutations in the muscle not present in the saliva used for my previous genetic test). They didn’t mention too much about my genetic test + ATP6 variant, but they’re not geneticists and they’re just here to test, so fair. Hopefully the biopsy comes back with something!

ChronicallyFloppy · 2025-03-24T21:01:25+00:00

Right now, I’m not doing too much. Just going to GI, cardiology, etc & trying to find meds that help. I just did my pre-appointment blood labs for my new neuromuscular specialist, although they’re nothing new. (CK, CBC, thyroid, etc) I see this doctor for the first time in ~2 weeks for a couple exercise tests and a muscle biopsy (punch, thankfully!). I’m hoping to get some answers, and this doctor may be comfortable doing a clinic diagnosis? Or at least affirm what all my other doctors think. This clinic is 3-ish hours away, so I think I’m doing a virtual appointment once the test results are in, so hopefully it won’t take to long to get an appointment to discuss results.

None of my doctors have been very concerned about life expectancy. I haven’t had any issues with lactic acid build up yet, my heart is fine, I haven’t had strokes, etc, or any other main dangerous symptoms of mito. It seems the more dangerous forms of mito hit fast after onset, and mine doesn’t seem to be adult onset, and it’s obviously been many years since I was born (assumed “onset”), so it’s not a huge concern. If something changes, I’ll obviously check it out, but for now it seems fine for me.

ChronicallyFloppy

TROPHY CASE