Hi, I recently got my Invitae results. The panel for genes analyzed said that they were testing a total of 265 genes but my results only show 245 genes tested. Does anyone have an explanation for why this would be or a simular experience?
I finally got an out of state diagnoses after being told by my PC provider that I "just have fibromyalgia" because she ran 5 tests and decided there was NO explanation for my pain despite me askong about EDS aka " this crazy young person is a hypochondriac because I don't understand what's happening after two shallow guesses"
She even tried to push me to this medicine for fibromyalgia which I learned makes EDS WORSE, I didnt tell her thats why I turned it down but I certainly never tried taking it.
Anyways, I struggle to get around, I struggle to leave my house, hell sometimes I struggle to leave my bed. I've been waiting to get an official diagnoses so that I can properly talk to a PT about the possibility of mobility aids.
I let my PC provider know that I got an official diagnosis and asked if she can put out a referal for me to get fitted and trained for mobility aids. She said that she put out a general referral and thatI can try calling one of the presbyterian locations. So I did. They let me know thay they don't do mobility aid fittings and that I'd need to go through a different place called home therapy or something.
So I let my PC know what they said to which she sent back a long message about how that place won't take my insurance and that I NEED to get fitted and trained by a PT or OT in order to use mobility aids, which like. .. yes??? That's why I'm TRYING to get an a appointment with one????
She let me know that i could try this other presbyterian location and let them know I have EDS and chronic pain. I'm frustrated. Normally if I need a referral she will give it to me for a specific person but for this she's sending me on a wild goose chase to try and find ANYONE that can do what i need. I feel like I'm getting punished for getting a diagnoses she disagreed with initially. I just really want to be evaluated for already, I dont want to keep having to stay in the house because of pain.
Unfortunately my state doesnt have anyone thay understand my conditions and if they do they DEFINITELY aren't covered by insurance. I'm working on building other care teams out of state, but that's just the thing, they're out of state which makes them expensive to get to both in money cost and in chronic pain(driving really wears on me).
Anyways, that's my rant, I hope thay i can get believed and helped sooner than later.
Two weeks ago both my parents texted me to let me know that the doctor found a 16mm growth in my mom's lungs. On Monday she visited a pulmonary doctor to test for cancer and per that doctors order, she will get a pet scan on Tuesday. Everything is moving so fast. I know that no one can plan for these kinds of things but this is truly the last thing I could have predicted. I'm angry. I'm scared. I feel numb and filled with chaos.
I'm pretty young and I feel very lost. How do I ease the chaos so that I can be a support for my mom? What comfort is there?
Hey y'all, this is my first year being able to attend the pride events, and I'm really excited but also confused. I can't seem to find much information on what is what. Does anyone know if you need to pay to be at the central plaza with all the vendors? Some sources say it's free others say it's not, just really confused and hoping for some more info. Thanks!
I just had something icky happen. I've never experienced a dislocation to my knowledge and I'm going to assume i still haven't.
anyways, when woke up and stood my knee felt "off", not painful, just off. So I sat back down and went to touch it and my kneecap was on the side of my knee/leg???? Like very much not where kneecaps are supposed to be. I think I was still sleepy because without thinking I started pushing it back to where it should be, it took two pushes, there were two loud pops but no pain at all. The fact that it didnt even hurt is so weird to me, like, wtf did I just experience lol???
But yeah, that was uncomfortable.
Hey y'all, I have a referal for my doctor and I just received the paper verion today. Written there is " Concern for EDS with PE findings and POTS/orthostatic hypotension"
I already knew that she diagnosed me with POTS but she has never said anything about PE findings or blood clots. I already messaged her to ask what she means but I'm just kind of shocked that she wouldn't let me know about blood clots. I wont hear back from her for a couple days since it's about to be a weekend.
Has this happened to anyone before?
I don't know how anyone starts to get diagnoses, I just feel so overwhelmed.
I've final got some diagnoses but it feels like the list of need keeps growing and the things thay cause me the most pain aren't diagnosed
I final got an appointment scheduled in August with a genetic counselor online for EDS, but I'm already tired thinking about the chance I have Heds and have to then go through trying to schedule an in person appointment with someone, which would take years. I'm also very sure that I'm dealing with MCAS and recently learned about ME/CFS, which describes me exactly, on top of the main symptoms, for years I've gotten EXTREMELY sick from any kind of exertion, its prevented me from working because evey time I do I end up sick and bed ridden. It completely stops me from living a normal life, I can't travel or meet up with people on a normal schedule because I can't enjoy it, if i can even wake up at all, I get sick and my body flares into this painful state of immflamation.
AND I also know that I need to get seen for stomach issue to make sure everything is okay with that.
The list of things I need to be seen for just goes on and on. Every thing just feels so overwhelming, I feel like I can barely get doctors to believe my pain in the first place, much less have them look for diagnoses that are hard to find.
I know that in a lot of ways I dont NEED a diagnoses for some of the stuff I deal with, but it would be hugely beneficial to have one and to have a doctor admit that it interferes with my life in a major way, that I can get help.
I feel so STUCK.
Are these atrophic? The second one in particular feels hollow and like you could push right through the skin.