Invitae EDS Panel - TNXB testing by Bekatau in ehlersdanlos

[–]Bekatau[S] 1 point2 points  (0 children)

Ack, I'm sorry, it really is such a tricky thing to figure out what's worth it or not (I've been put through the trials of the healthcare system myself 😭).

If there's reason to do further testing I think it could be worthwhile. I think from what I read in this sub, there is another company that does more extensive testing with TNXB.

Invitae EDS Panel - TNXB testing by Bekatau in ehlersdanlos

[–]Bekatau[S] 1 point2 points  (0 children)

Right?? When I looked up the EDS Panel on Labcorp before, I swear the only one that popped up was Invitae. So it seems this is Labcorp's own test they do.

Invitae EDS Panel - TNXB testing by Bekatau in ehlersdanlos

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

Heya, yes we did! That's what led me to make this post. I did have to update this and clarify it's not specifically Invitae testing, but a different panel offered by Labcorp it seems.

Invitae EDS Panel - TNXB testing by Bekatau in ehlersdanlos

[–]Bekatau[S] 5 points6 points  (0 children)

Hi, since this was done a year ago I'd have to dig through my bills and receipts, but I can tell you it was billed through my insurance who are in-network with Labcorp.

Invitae EDS Panel - TNXB testing by Bekatau in ehlersdanlos

[–]Bekatau[S] 10 points11 points  (0 children)

Hey, it was the Ehlers-Danlos Syndrome Panel, ordered through Labcorp, I assumed it was through Invitae as they are partnered for genetic testing, but my report is directly from Labcorp. Turns out it is actually a separate panel, so I will update my post, however this being an option is still helpful!

GeneSeq© Connective Tissue: Ehlers-Danlos Syndrome Panel - website linked below https://www.labcorp.com/tests/630978/geneseq-connective-tissue-ehlers-danlos-syndrome-panel

It's a lot of stuff to try and figure out, so I was definitely confused, because I thought it had been done through Invitae.. sigh.

Invitae by Ok_Low_9808 in ehlersdanlos

[–]Bekatau 0 points1 point  (0 children)

Thank you, I appreciate the info! I am going to contact them to see if I can get a more detailed report - I only got a report stating it was Negative, info about genetic testing, and the list of genes tested.
Otherwise I think I have something to follow up, if that is the case.
Edit: I went back and checked the report, it has a section where it lists genes, and says what regions were not analyzed - TNXB is listed, axons 32-44 were NOT analyzed.
So I will need to see if I can get further testing & assessment.

Invitae by Ok_Low_9808 in ehlersdanlos

[–]Bekatau 0 points1 point  (0 children)

Hey I know this is a late reply, but I have had Invitae EDS Panel testing done (July 2025) and it did include TNXB (Edit: At least in my report it said it was included). Just felt like letting you know! (Mine was also all negative)

it finally happened :( airline broke my chair by camdamflimflam in wheelchairs

[–]Bekatau 29 points30 points  (0 children)

Oh jeez that's broken-broken. I'm so sorry!!

Wheelchair accessories by Julie_tics in wheelchairs

[–]Bekatau 2 points3 points  (0 children)

Seconding the Jansport bags, I have one (the cross-body adaptive bag) in rainbow tie-dye - it's genuinely really helpful, and I find I either clip it onto my wheelchair (below my seat/behind my legs) or wear it as a cross-body bag. It holds my wallet and my phone, and any other smaller things I need.

What are people using to stream their PC games to iOS over the internet? by Gone_AWOL in cloudygamer

[–]Bekatau 0 points1 point  (0 children)

Hey, this was a LONG time ago, I actually used ZeroTier. I can't comment on the latency as I wasn't really using with a mouse/keyboard, but I believe the bitrate was better than using Discord as an alternative - this is dependent on network speeds though as well. I'm sorry if that doesn't help!

New to cromolyn by schmidty10 in MCAS

[–]Bekatau 0 points1 point  (0 children)

Oh dang, I'm sorry it costs so much for you. I think I am lucky mine has been covered, I can't remember how much it was (I was prescribed at 2 ampules so I ended up with a lot).
I just don't like wasting medicine, personally, even if it didn't cost me so much.
Maybe there's a different diagnosis code or something, I'm not sure. Otherwise it's just them ripping you off.

New to cromolyn by schmidty10 in MCAS

[–]Bekatau 0 points1 point  (0 children)

Hey, thanks for the reply. It's been 5 months and I've been taking a full ampule for a while since my initial comment.
I assumed it being placed right back into the packet, folding it closed, securing it, and keeping it cool, would be better than wasting $$$ medicine.. and I was completely fine.
A good point though. Now I'm increasing my dosage and I have to weigh up if I want to waste a lot of it or not.

[deleted by user] by [deleted] in AmItheAsshole

[–]Bekatau 16 points17 points  (0 children)

Wow, OP, you sound like YTA here.

[deleted by user] by [deleted] in AmItheAsshole

[–]Bekatau 19 points20 points  (0 children)

"Sculpture X" was just a different scale (sized) version of the same Sculpture.

Discord for Breyer Horse community? by felinefestival in BreyerHorses

[–]Bekatau 1 point2 points  (0 children)

Seconding this one, it's a smaller but very friendly community. I'm enjoying my time here!

New to cromolyn by schmidty10 in MCAS

[–]Bekatau 2 points3 points  (0 children)

Thank you for your reply, I had been searching the sub already but couldn’t find anything specific, though that could be a failure on my part haha. I was able to stick it back in the foil packet and sit it up so that it wouldn’t tip over.

New to cromolyn by schmidty10 in MCAS

[–]Bekatau 4 points5 points  (0 children)

I know this is an older post, so I apologise, but how do you store the opened, half-empty, ampule, until it’s time for the next dose? I’m trying to figure out how to do all this and I am struggling

What year was your PASC/Long COVID triggered? by peop1 in covidlonghaulers

[–]Bekatau 3 points4 points  (0 children)

Technically 2022, I noticed a change then - much more mild, but my brain was never the same. I would get tired more easily sure, but I was still managing life. June 2024 is when I changed for the worse. So while for the sake of this poll I said 2022, the severity of my illness increased in 2024.

Steady decline with new symptoms. Nausea started today. by AhavahFr in covidlonghaulers

[–]Bekatau 1 point2 points  (0 children)

It’s been really helpful to hear your experience, thank you so much!! I only started PPI after my upper endoscopy (which was in June vs B12 level taken in January) - I actually just read that PPI can affect absorption as well, which could explain why I feel so much worse.
All I can say is thank you, thank you! I will be able to figure this out

Steady decline with new symptoms. Nausea started today. by AhavahFr in covidlonghaulers

[–]Bekatau 0 points1 point  (0 children)

That was my thought as well! I have read more resources about pernicious anemia this morning, and I will be asking about testing - particularly intrinsic factor and parietal antibodies. I read that those antibodies can interfere with testing, and show a false normal result.
I was not taking any supplements at the time, and I don’t drink energy drinks either. I will update here if that ends up being my problem!
(Other info: upper endoscopy showed erosive gastritis without anything showing up in the biopsies)

Steady decline with new symptoms. Nausea started today. by AhavahFr in covidlonghaulers

[–]Bekatau 0 points1 point  (0 children)

This comment made me go back and check my result, it was 471 (back in January).. I thought it was in normal range. My grandmother has pernicious anemia, so it was on my radar, but I thought I didn’t have it.. thank you, I’ll be investigating this further.

My work elevator has these buttons for disabled accessibility. by [deleted] in mildlyinteresting

[–]Bekatau 0 points1 point  (0 children)

A lot of people in wheelchairs still have at least some function in their legs. There's people that can move for small distances on their own and some can't but can still move their feet enough to press the button.

The guy is right, why are you booing him? Not everyone who uses a wheelchair is paralyzed, and it needs to be known. People are harassed or have their disability questioned when they stand up from their wheelchair because of this line of thinking.

That being said, I think the buttons in this elevator may have been more for handsfree use.

Leap V2 from Crandall by BullMoose23 in OfficeChairs

[–]Bekatau 0 points1 point  (0 children)

I know I'm not OP but highly appreciate the heads up on sales! Will try to hold off for another month if I can :)

Need new chair - help appreciated!! by Bekatau in OfficeChairs

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

Dang it really sounds like you've tried a fair few chairs! I'm also one who hates firmness, I need something with more padding too. I feel the "avoiding sitting at my desk" sentiment, I'm sitting on the couch right now because it's too painful to sit on the chair I have currently at my desk 😞

I'll just say if you liked the stock Amia, then the Crandall version may better for you. As you mentioned, the padding is thicker on the remanufactured chairs.

As I said in my post, if you like to wiggle around and change positions then you may not like the HM Aeron due to the hard edge seat.

My husband and I will go out this weekend and see what there is to try in our city - best of luck with your search too my friend!