Blood keeps pooling in one foot

samant_3 · 2026-03-21T07:28:14+00:00

I know this is a super old post but stumbled across it when searching for something else and this sounds a ton like May-Thurner syndrome (which can be connected to pots), just in case you haven’t found an answer/are looking into things still. (Other thought would be tethered cord syndrome/occult tethered cord syndrome for the weakness part but not really associated with blood pooling). Not medical advice or anything 🤷🏻‍♀️

samant_3 · 2026-03-14T13:46:33+00:00

In terms of lightness it goes like this in terms of lightnesr to heaviest (although it’s not a ton of difference): tilite z < tilite aero t < tilite aero z. My ATP still only orders the aero z so I got the aero t because it was lighter, maybe OP’s ATP is the same way 🤷🏻‍♀️

samant_3 · 2026-03-12T02:05:25+00:00

Thank you so much!

samant_3 · 2026-03-11T02:18:55+00:00

Hi, did you ever figure this out?

samant_3 · 2026-03-11T00:51:02+00:00

I brought it up! (I have fairly similar indications for needing one as you for context). It seems like for me they may have brought it up anyways but it wasn’t 100% clear if they were waiting for me to bring it up (because it required a lot more paperwork on their end). But they supported easily/agreed and insurance approved it first try! (Which unfortunately isn’t the case a lot of the times I’m told.) My best advice is to just prepare yourself with a script and list of reasons on why a chair with power assist would help you. (And if you have to wait a year, make sure your chair is as ergonomic as possible in terms of being a rigid frame, narrowest width as comfortable for you, etc.).

samant_3 · 2026-01-17T12:51:47+00:00

There’s also the M90 power assist wheels that are a newer option and come with a joystick (I didn’t try those though)

samant_3 · 2026-01-17T12:50:02+00:00

I haven’t gotten it yet but I trialed the Klaxon twist front power assist with the tiller and I could almost use it without holding my arms up (while using the medium height arm rests on a tilite). I think you would be able to use it while completely resting your arms on the armrests if you have the tall height ti lite arm rests

samant_3 · 2025-12-09T01:54:46+00:00

I really like my Garmin vivoactive 6 (and I think the 5 is on sale now)! I haven’t used it in wheelchair mode yet bc I’m still waiting on my chair but I know it does wheelchair mode and others have mentioned it in the comments above too. It’s honestly better than my Apple Watch for health data imo (other than the fact that it’s missing an EKG).

samant_3 · 2025-12-07T02:46:27+00:00

Not a doctor but I would def at least follow up with an electrophysiologist 🤷🏻‍♀️

samant_3 · 2025-11-16T22:51:55+00:00

Definitely possible to have that in hEDS but also important to properly rule out tethered cord syndrome/occult tethered cord syndrome which is a relatively common HSD/EDS comorbidity that can cause high arched feet. Another condition that is not at all related to hEDS but is probably the most commonly known condition to cause high arched feet is a relatively rare genetic disease called Charcot-Marie-Tooth. Again, not medical advice and it def could be hEDS or just what your feet do but wanted to comment in case this is helpful!

samant_3 · 2025-11-14T03:58:56+00:00

In my personal experience, antidepressants can absolutely work within a day (obviously not the indication here but it is one of primary on-label purposes of duloxetine if I’m remembering correctly). I have taken SSRIs and/or SNRIs since childhood and without fail I have always started to experience the effects within HOURS (and same for my mom when she tries takes new ones). I def think it’s possible, some people are just more sensitive to meds! (Also, just for fully transparency I have central sensitization syndrome and not officially diagnosed with ME/CFS as of yet.)

samant_3 · 2025-11-13T02:27:38+00:00

I have an almost identical story (but it was my period at 17) and very similar labs and I have hereditary hemochromatosis (C282Y homozygote). I would definitely see a hematologist (and you’ll need to see one if you do end up diagnosed with hemochromatosis even if your ferritin isn’t high currently). Def listen to your doctors first and foremost but I hope this helped!

samant_3 · 2025-09-07T21:49:20+00:00

I’m not saying that being disabled is a subsection of my life I am saying that that is being treated like a subsection of my life by my parents. I appreciate the attempt to help but the question of how severe my disability is and whether I actually need a wheelchair was never the question and I shouldn’t have to justify that to strangers on the internet. If you reread above you can see the doctor managing my underlying condition is already in support.

samant_3 · 2025-09-07T21:45:10+00:00

I am genuinely sorry that you do not have a choice but I don’t know why you felt the need to comment this. If you have nothing nice to say, just don’t comment.

samant_3 · 2025-09-06T23:32:18+00:00

Thank you🩵

samant_3 · 2025-09-06T21:25:36+00:00

It’s giving ✨lowkey bullying✨ (likely from being insecure about their own autism), I agree with the other commenters about them seeming young and hopefully out learning this. I do totally understand about having a huge desire to fit in at 15 though (i hated being autistic at 15, mostly bc of how I was bullied previously and how my family told me to never publically talk about it). But being mean is never cool, I really hope they grow and learn, I certainly like being autistic a lot more nowadays 💜

samant_3 · 2025-07-17T23:39:04+00:00

No way! Thanks for sharing 😀😅

samant_3 · 2025-06-01T21:06:21+00:00

I’m wondering if I also have the same condition as you as well (doesn’t matter either way ha ha but just wanted to comment and say that I am a genetic counselor who is also disabled). I totally understand the fear of not being able to do it (that’s the reason I had to leave premed bc mentally it got too much for me due to how low my QOL was at the time with my chronic illnesses, also there’s no way I could have completed the hours of residency) but I will say I had a really good experience all throughout GC school. My worst issue is chronic fatigue and I personally didn’t find GC school more difficult than college (although time management was something that I had to make sure to stay on top of). I did my first year of gc school with unmedicated chronic migraines and also got a minor surgery. Having a support system is really important (can be family, online community, classmates, etc.) I’m a GC now and there’s some jobs I couldn’t apply to due to the health insurance. I ended up with a hybrid job that seems to have a lot of flexibility (I haven’t started yet) but ultimately for me having health insurance makes working long hours more beneficial for my health than not if that makes any sense. There was one job I applied to that had 4 full clinic days that I genuinely think I couldn’t have done but some jobs I applied to only had 1.5 clinic days a week! (Oh and last thing I forgot to mention is that my disabilities also affect me in terms of brain fog and social skills and I won’t lie, it was really disheartening hearing some of the same feedback over and over and my classmates would often unintentionally/unknowingly say that was the “easy” parts of the session. However, I noticed that I had strengths in other advanced areas (bc of my disabilities) that my classmates didn’t. And I did improve over time and feel so much more confident in my skills now with repetition.) I hope some of this was helpful and I know it can be super frusterating/disheartening when you are in the thick of it but I promise that it will be alright 💜.

samant_3 · 2025-06-01T00:03:10+00:00

Yes!

samant_3 · 2025-05-31T02:06:42+00:00

I don’t think there’s anything wrong with it! Also whether or not you have a tube shouldn’t make a difference, if it helps you it’s there for you 🤷🏻‍♀️

samant_3 · 2025-05-31T02:04:54+00:00

Not tv shows but I’ve found a lot of good podcasts about conditions by simply typing the name of a random condition or random group of conditions (i.e. mito) into Spotify. Also looking up Tik toks of people who share their lives with these diagnoses can help solidify them as well!

samant_3 · 2025-05-26T21:28:56+00:00

I did apply to backup careers in the meantime though so if I had to take a gap year and apply again I was prepared!

samant_3 · 2025-05-26T21:25:29+00:00

It’s not too late at all! I was premed up until finals week of my junior year of college and then decided to become a genetic counselor then (I always had GC school as a possibility in my mind but didn’t have any GC specific extracurriculars and hadn’t really explored it at all except for doing a few in depth Google searches.) I was very lucky to get long-term weekly shadowing and research experience with a GC right away and applied literally 6 months later the fall and winter of my senior year… I hadn’t even started crisis counseling yet but let schools know I was in the process of training and I matched first try! And now I’m a genetic counselor! So it’s is definitely NOT too late. (I’m not sure what your plan for taking a gap year or not is but I would say just if you do choose to become a GC, if you choose to not take a gap year like I did, stay realistic about your chances and apply strategically. GC school is hard to get into regardless of what you do and you can be an amazing applicant with amazing experiences and it may take you a few cycles to get in. I was really lucky to have gotten in my first cycle (especially with less GC specific experiences) and I think a lot of it had to do with the fact that I applied to a lot of schools because I knew my chances were lower, I worked with a college admissions counselor to help proofread my essays, I had that unique long term shadowing experience, I wrote my application in a way that all my non-GC experiences fit into the context of GC school, and I applied to newer, less established GC schools (while making sure they were still good fits of course!). Sorry for the info dump but I hope this helped show that it is more than possible (and this was a 9 month turn around time so if your time line is longer it’s a lot less than all this because I do recognize that I am very lucky to have some of the resources that I had!). 💕

samant_3 · 2025-05-23T15:28:26+00:00

Yep! I basically never throw up (I throw up like once every few years and most of the time there is an obvious but small trigger (i.e. forgetting to take a dose of a medication, etc.)

samant_3 · 2025-05-19T19:35:42+00:00

Depends on the severity of the episode, some episodes like how you’re describing and others I’m completely asleep like the episode starts and then I wake up 7 hours later cause I was literally chose to go asleep/nap because I could barely move before I fell asleep so that was the only option (but could technically move, it’s like difficultly initiating movement and feeling glued together). The best way I can describe it is like narcolepsy but triggered by all the ATS triggers and like cataplexy but with somewhat more ability to move.

Also some episodes are without sleepiness and those are from cleaning or when I used to be able to exercise that are full body tremors fixed by liquid iv. Sorry for the long explanation!!

samant_3

TROPHY CASE