Kit 🌙✨
Region: US
Saturday 09 March 2024 20:27:13 GMT
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FloorCloud :
I'm not sure if this has been addressed but what do you do if they have it marked in your file that your a hypochondriac because of your parents?
2024-03-11 17:04:56
13
M. :
I’m sorry…rib dislocation? You gotta explain bc I think I had something similar!!
2024-03-10 14:38:25
4
Marni Gold-Chronic Beauty :
can you describe your experience with the tilt table test? I probably have to do it soon
2024-03-17 00:28:56
3
Cyn :
This actually helped a lot. I will definitely start a journal of my symptoms now for my next appointment.
2024-03-12 20:33:22
1
Lou :
do you have stretchy skin with the heads?
2024-03-10 11:05:16
0
Lloyd :
Out of curiosity, do you also have ADHD?
2024-03-11 11:20:53
1
tired.ren :
my doctor told me to get off the internet and said if nothing comes back on the blood work or if they fix any issues they see and it's still happening then he will pray
2024-03-14 03:40:43
2
ParalyzedQueen :
Good to know. I definitely go in describing a BUNCH of symptoms and they immediately say it's anxiety. I'll do one or two at a time.
2024-03-10 01:26:35
29
Emma June Sisco :
This is SUCH great advice - MAKE SEPERATE APPOINTMENTS. It suuucks, but that is the best way for them to listen
2024-03-09 20:49:50
21
Dewi :
just left my last appointment crying because I was told it's probably anxiety.. again. then she put in my chart commenting about my bpd and making me seem crazy.. cool..
2024-03-10 22:16:13
12
Jalisab :
I seen drs saying I’m having pots like symptoms and their all like that’s rare
2024-03-11 07:37:51
8
🌸 Fawn 🌸 :
The amount of times I have to walk the doctors to tests to try is so upsetting 😭
2024-03-11 21:55:21
7
Kirsty Ashman :
It's amazing how much we have to hold these so called professionals hands, and stroke their egos of course.
2024-03-10 12:12:46
7
L :
If you don’t mind sharing, what kinds of appointments/treatments are you doing that you’re going so often? My doctors gave diagnoses without much trouble but I feel like they haven’t offered much
2024-03-09 21:28:31
7
L :
This is so helpful. My cardio did diagnose my hEDS when we did pots testing. But as I learn more about mcas, I think that might be there too but don’t know what to do next
2024-03-09 21:23:35
7
QueenGemini :
I tracked everything for my POTS and i got an eyeroll about not doing it right and maybe my pulseox was cheap (it was the same one they had and the app tracked it all).
2024-03-11 22:23:36
6
riley :
I went to got a tilt table test and met the criteria but the doctor wouldn’t diagnose me. i went from 76 bpm to 128 bpm
2024-03-12 00:11:22
5
ash :
are you kidding me 😭 how am I supposed to do any of this while extremely disabled with barerly any support system?
2024-03-10 18:23:41
5
𝐴𝑚𝑜𝑟𝑒 𝐷𝑒𝑠𝑖𝑔𝑛𝑠 ♡ :
I’ve been diagnosed with POTS, MCAS, ME/CFS, FIBROMYALGIA all since I got Covid in 2022. I’m in Uk. I’m struggling to get diagnosed with POTS. I’ve not got Eds - my MCAS is the killer!
2024-03-09 21:10:19
5
Peyton the Pagan :
I have strong belief I have pots, I get dizzy/short of breath/ heart palps if I stretch suddenly just standing. and I think I'm at least partially eds? is it possible to only be 50% hyper flexible?
2024-03-10 13:43:29
4
Nanna :
The doctors definitely need to be coddled in order to do their jobs. Glad you got help!!
2024-03-10 10:47:11
4
Calpernia55 :
I think you explained it perfectly. It’s a complicated subject. Wishing you better health! 🫶🫶🫶
2024-03-13 00:13:36
3
Chloe Quayle :
Super interesting hearing about your POTS diagnosis process, when I was tested for it they literally just had me lay day and do an ECG, no tilt table, sitting to standing and that was the last (1/2)
2024-03-11 13:26:50
3
Katie :
photographic evidence helps. I have an entire folder full of pictures and notes
2024-03-13 13:01:31
2
Jane Wright :
This advice is incredible. How do you handle the appt burnout? I get so overwhelmed having all these specialists and appts that I feel like I can’t STAND another specialty.
2024-03-11 22:38:33
2
Charlotte 💙 :
Can I ask what treatments you get for IBS? I finally got a diagnosis after ages and was just told to suck it up as there isn’t anything that can be done. So no help whatsoever 😭
2024-03-10 17:15:45
2
~The Christine~ :
My doctor's first thing is "might be your iron level?" Like ma'am, never in the history of my myriad bood tests has iron ever been lower than necessary, can we start being serious anytime soon? 😭
2024-03-10 17:04:03
2
Alice ♿ 🏳️⚧️ :
I've been diagnosed with so many things but they refuse to properly consider hEDS even though I meet the criteria. It's either anxiety or fibro. but the symptoms are nothing like fibro.
2024-03-10 16:16:09
2
rachelbrown761 :
PCP referrals are key! Go in w a list! Take your time. If hEDS 1st, did trajectory. But PCP every 3mos, do your best. As diagnoses come in, next PCP get referrals. And listen to her!!! Great approach!
2024-03-26 05:02:35
1
rachelbrown761 :
Solid advice and didn’t come off scattered at all!!
2024-03-22 06:23:37
1
Sabrina :
I came across (h)EDS and always thought that I have a lot of the symptoms, but when you said “rib dislocations” I was like oh crap 🫠 two weeks ago I went to a PT and he noticed my rib dislocated and-
2024-03-18 06:57:59
1
@chileanwithcoffee :
I think that's insane that we have to do half the work for these "doctors", like sir, this is your job. so tired of being dismissed.
2024-03-15 17:01:40
1
MrsRidenhour :
my hematologist is an EDS specialist I was there for bruising. I was given info for the EDS society & saw their names. I now have a list of other drs to talk to.
2024-03-15 01:00:21
1
Wild Little Folk 🌱🍄🌈✨🌕☄️ :
my gosh I wish I could do then one at a time but here it takes about 5-15 years - if you're lucky - to get even 1 dx. I would be completely dx by my 90ties 😂😂😭🙃
2024-03-13 23:36:19
1
Riles :
what about the nes?
2024-03-13 06:06:24
1
christinecaron252 :
Do you share in other videos treatment plans? Are any of these conditions curable for you?
2024-03-12 19:24:50
1
ale :
GP said i might have pots, went cardiologist they gave me a 24hr screening, it wasnt a bad day for me so it didnt show many abnormalities... they refused to get me any other tests 👍 its hard out here
2024-03-12 17:44:47
1
TikTok :
It’s like we’re doing the doctors jobs for them!!!
2024-03-11 18:42:32
1
Reddd :
Like people have the time and energy to go in for separate issues. (So it's the 37th appointment this year so far, and it's only March!)
2024-03-11 10:46:07
1
annadolceboss :
Do you see an endocrinologist at all?
2024-03-10 15:50:20
1
Lil Anxietychan :
im so bad at tracking stuff :c
2024-03-10 14:16:10
1
I am Light and Fire :
What is the treatment?
2024-03-10 01:11:11
1
Emma June Sisco :
This is exactly how it went with my PCP. I had to tell him “I think I have EDS” then explain why I thought this - he referred me to a rheumatologist
2024-03-09 20:47:48
1
CharBees - Twitch Streamer :
I'd love to make separate appointments but my doctors only has on the day and to do that I have to be physically able to queue up before 8am and they don't get why I don't come in when ill
2024-05-19 18:14:32
0
Emily Swalwell :
I've had heart rate and palpitations and even with stress test and holter monitor cardiologist can't figure what's going on. I'm hypermobile with ibs. he has me on Beta blocker to control it
2024-05-09 10:03:03
0
Rainbow Pixie :
I feel like now that fibromyalgia is on my file they won't try something else it's bad to just learn how to function. Go
2024-04-17 13:51:56
0
Rainbow Pixie :
I have severe ibd and they said fibromyalgia but they are like it's a mystery it's so frustrating I have no remedy's and just feel like I'm gonna pass out 24/7 been waiting for a year for table tilt
2024-04-17 13:47:28
0
🥔 :
They only checked my blood pressure for POTS! My resting rate is getting higher by the day, too. I can feel the jump 😭
2024-04-07 15:45:19
0
Neuro.punk.cafe :
When was this? I feel like after COVID, so many teens & young adults have POTS now that it’s wild for a dr to not have even heard of it
2024-04-05 21:35:45
0
leilanicabeebs :
i’ve had high iron for idk how long like extremely high despite being vegan for 8 years and i’ve been experiencing all of the pots symptoms for 1.5 years i don’t know what to do bc drs don’t listen to
2024-04-05 15:58:14
0
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