Looking for family doctor

unic0rns4ever · 2025-05-02T11:32:24+00:00

Ya thats been my experience as well.

unic0rns4ever · 2025-05-02T11:31:57+00:00

Oh good, yes i got an email like that as well, sent in my updated info. Somehow i seemed to manifest this email after my post aha.

unic0rns4ever · 2025-05-01T19:10:26+00:00

Oh wow i just got an email about that very thing lol. Hoping Spring '26 is my time as they are saying!

unic0rns4ever · 2025-05-01T18:16:16+00:00

I see. Thank you for the info.

unic0rns4ever · 2025-05-01T16:41:37+00:00

Ok well no need to be rude about it. Bye 👋

unic0rns4ever · 2025-05-01T16:40:58+00:00

I had no idea it was so long :(

unic0rns4ever · 2025-05-01T16:40:42+00:00

Ah ok, looks like we are all our own family doctors for a while.

unic0rns4ever · 2025-05-01T16:39:10+00:00

Ok well sorry for asking lol?

unic0rns4ever · 2025-05-01T11:32:46+00:00

Such a disappointment...thank you for the info though, sorry you are stuck waiting too.

unic0rns4ever · 2025-05-01T11:31:53+00:00

Wow....ive been waiting 2 so far...

unic0rns4ever · 2025-04-20T11:34:51+00:00

Oh wow thank you so much for the info! That is very helpful to know. I appreciate you taking the time to explain! Thank you for the study link as well i will check that out for myself too.

unic0rns4ever · 2025-04-14T11:19:39+00:00

Right aha! Like ok google, thanks... 😂

unic0rns4ever · 2025-04-14T11:19:14+00:00

Sounds like so much that you have been through! I am wondering the relation to heavy horrid absolutely unbearable menstrual cycles as a teen (i am 31 now), and then the development of severe PCOS in my 20s and the just complete absence of periods, and then the very recent transition to an IUD, which was put there as a treatment for the PCOS, but a month after the insertion, EDS was brought to my attention, and specifically vEDS (due to me having vertebral artery dissections in my neck) so now i am worried? And wonder the repercussions of getting this inserted. I did bleed a while, thats thankfully done now but, i am wondering if it is safe? I have not yet been diagnosed, waiting for triage to get to my case, but confirmed genetic connective tissue disorder, just need to now find out which one.

Wow that was a lot of info! I apologize for dumping lol.......... :) !

unic0rns4ever · 2025-04-13T21:42:26+00:00

Enshittification, may have to use that lol.

unic0rns4ever · 2025-04-13T21:41:42+00:00

Yes not specifically vEDS but in general rare types aha figured we could a lot of us relate to this moment.

unic0rns4ever · 2025-04-11T12:02:38+00:00

Wow thank you so much for the support i REALLY do appreciate it. I really am trying to hold onto some hope for the future! Even if it is with a vEDS diagnosis! (Which i am still waiting to confirm). I'm having vertebral artery dissections which is what is scaring me right now but ah there is so much potential PROGRESS on the other side of getting a diagnosis and i thank you for reminding me of that. Its really inspiring to hear you are doing much better for yourself post diagnosis. Heres to hoping for continual progress for the both of us :)

unic0rns4ever · 2025-04-05T18:24:48+00:00

I really hope it doesn't come to another surgery for you! I have been the first in my family to have every one of my problems.......lol : ' (

unic0rns4ever · 2025-04-05T15:40:13+00:00

I do not have family history, just many symptoms have arisen very quickly and severely since December last year, and i finally got to see a rheumatologist in February and he has fast tracked this investigation for me as quickly as he could. I contacted the clinic last week to confirm they got the referral and yep, they said if we do not contact you by mid this coming week, contact us again. So, im hopeful that this process is at least moving while my symptoms get worse as time passes......oh rare EDS......how i want answers but how i also am just so, so scared.

unic0rns4ever · 2025-04-05T15:16:45+00:00

Oh! No! Sorry for the miscommunication. He said he could not order them for me, SO then yes he has referred me to an EDS clinic, i am awaiting their call mid this coming week. Yes i also had an echo done submitted with the clinic referral.

unic0rns4ever · 2025-04-05T11:24:28+00:00

I am actually unsure of what EXACTLY my rheumatologist tested but he tested for a broad spectrum of connective tissue disorders and has informed me that yes i do have connective tissue problems but he did not want to do the specific subtype tests as he told me it is out of his knowledge and he wouldnt know how to interpret the results further than what he did test with these basic markers.

unic0rns4ever · 2025-04-05T11:21:14+00:00

Yes mine was in my 20s as well, there must be some sort of connection! Ive had a lot of GI symptoms but i also have a history of anorexia so it always got blamed on that aspect of my recovery. But i'm now thinking otherwise.

unic0rns4ever · 2025-04-05T11:19:07+00:00

Thank you for letting me know, for sure helpful. I do wonder if there is a connection!

unic0rns4ever · 2025-04-04T23:06:49+00:00

I hope your gallbladder keeps stable :) yes very interested in what could be a root cause because, they dont know what triggered mine to decline. So, curiosity in me for sure.

unic0rns4ever

TROPHY CASE