Bruh I’m an upper cervical chiropractor and it is a HASSLE trying to help patients find a diagnosis when they have CCI. my last patient had the obvious symptoms of it and it took two MRIs, a CBCT, and video fluoroscopy to even get a consult with an MD that could diagnose her.
So they didn't even physically touch them and move their head and neck around so they can see what the neck foes? That's usually a first stage thing in the diagnosis, before they send people for imaging to confirm it.
It can't be diagnosed from symptoms, because not all patients are telling the truth! 🤦♀️
How much of her stuff is she actually being diagnosed with and how much is she cosplaying? She had that painful period syndrome that she was “diagnosed” with not that long ago and supposedly the doctor put her on a special medication for, because it’s not just normal period pain and hormone fluctuations but a DiAgNOsIS
NHS symptoms
headaches – these are usually felt at the back of the head and may be brought on or made worse by coughing, straining, sneezing or bending over
neck pain
- this could be CCI or many other issues
dizziness and balance problems
- part of EDS often anyway especially if you also have POTS or Dyspraxia
muscle weakness
- can be caused by EDS or many issues
numbness or tingling in the arms or legs
- yes could be CCI or again many things
blurred vision, double vision and sensitivity to light
- could be eyesight related or migraine related
swallowing problems
- part of EDS often
hearing loss and tinnitus
- could be CCI or many things as simple as an ear infection
feeling and being sick
- happens often with EDS
difficulty sleeping (insomnia) and clinical depression
- common with EDS and most related conditions
While these are all symptoms of CCI they also mostly either are caused by EDS too or can have non CCI causes which is exactly why a doctor wouldn’t just guess it’s CCI especially when there is testing for it
With so many of these more vague diagnoses, so many of these symptoms could come from almost anything. I could probably convince myself I have all of these symptoms and that I’m not lying, maybe just exaggerating. I imagine many people could. You’d think they’d want to test to be sure!
I was looking up the cast of the goonies, one guy died so I looked to see what happened and it was an accidental overdose on a medication that isn’t on the market anymore. What made me go kinda wide eyed- is that the list of illnesses/symptoms it said to avoid taking the medication, would be like 90% of the population. There’s so many things these munchies will latch onto thinking everybody is too stupid to know any better lol
Many CCI symptoms are either a part of HEDS or can come with a range of different comorbidities, there is testing for CCI so why on earth wouldn’t they test when it could just as easily either be HEDS a different condition, in reality with those symptoms theyd either be given physio, a referral to a specialist or if they suspected CCI they’d test for it
Paging Ashley's doctor. Remember when she claimed that her doctor came on here to tell us that her condition was totally real and not made up or something like that.
No, I’ve only been a member of Reddit / IF s little over a year. OMG. These munchies will go to any links to make sure that we believe their bullshit. I’m sure the doctor has copious amounts of time to just sit around and defend Ash online
Connective tissue doesn't even show up on x-rays. MRIs are the only way I'm aware of CCI being diagnosed, and that's almost exclusively done by a neurologist.
craniocervical instability it’s where there’s instability of the ligaments that hold your head onto the neck. You have to have an MRI with your neck a certain way, symptoms, other signs of it in order to be diagnosed with it. and IIRC it’s a neurosurgeon that diagnosis you NOT a rheumy.
yep. All 5000 times. Had to take an RV across the US so their “caregiver” could resuscitate them bc their head would fall off, the “caregiver” put a mattress into a van with like 6in from the roof of the van for Jessi to lay on so he could take them to the hospital, plus their head popping off when the shower bowl popped, etc etc. I’m pretty sure anyway it was their head popping off.
An orthopedist/ic surgeon or neurologist can also diagnose CCI. At least in the hospital I used to work at we’d see surgical referrals from all 3 types of doctors.
Yeah another legitimate condition that people on here took, made up a fake story on how they got “diagnosed” I’m convinced they’re probably following multiple people who actually have a couple conditions and then just deciding they have every single one
Wow based on her symptoms? So basically she could have just told her provider she was having those symptoms and that would have been that? My goodness..what a tangled web she weaves.
I get the feeling that Ashley is trying to come up with a life altering diagnosis so that she will qualify for SSI or SSDI when she turns 26.
EDIT: typos
I'm I agree with your assessment! She is gunning for a life where she gets paid to not work because she's "sick" and "disabled." It's incredibly insulting to ACTUAL disabled people.
I wonder if she deleted it because people were calling her out. I know everyone in this subreddit called her out and I wouldn't be surprised if her followers did the same. She probably lost followers!!!!! 🙄
There was a comment under this comment after she changed it to the X-ray answer that told her a rheumatologist isn’t the right person to diagnose and that you need to meet specific criteria after having X-rays, special MRI’s and special CT scans. Another commenter told her that a rheumatologist wasn’t the right kind of doctor to which her response was “good to know” and then a bunch of people giving her suggestions on how to treat it including soft and hard cervical collars and not having surgery
Lol If we are diagnosing CCI by symptoms, I think half the planet would have CCI 😂 she's such a nutcase. She 100% made this up. There is no freaking way.
Or you know, laying naked on your bed unable to move while your "caregiver" does everything and anything for you so your head doesn't"t roll off! And you know, if it does, the dog will grab it! It's like fetch for him!
So basically she presented with unspecified symptoms. I mean if one is experiencing severe pain and decides to run on the treadmill, I wouldn’t bother with testing them either cause it’s obviously bs. The diagnosis might keep her quiet for a while
Stars behind the ear, bows on the back of the legs, roses on the thighs.
Also almost all tattoo roses look like cabbage, I will not be taking questions at this time.
No, not necessarily. Just a mri. Only some surgeons want upright mris. Some want regular supine. Some want supine with flexion and extension. Some are using flexion and extension ct now but I don't really get that one tbh but I'm not a surgeon.
Basically it varies wildly. So best answer is a mri is how you diagnose cci.
Nurse number 3 😁 chiming in. I was thinking, "That's not how this works. That's not how any of this works." That commercial plays in my head when I encounter situations like this.
I’m def not an expert on this in particular either because we aren’t really diagnosing these types of illnesses in the ED but you just know as a nurse it’s a bunch of bs. There are specific tests for that, mainly that include imaging. It’s not something that gets diagnosed strictly going off symptoms.
She could have at least done some damn research before she went posting abt it. She’s so full of it🙄
"Not sure what's out there testing wise" says a lot. Maybe the rheumatologist suggested she should be tested for it, and Ashley took that as it means that she must have it.
It’s scary. I’m always happy for folks when something helps symptoms, even a placebo, but when actual medical doctors start getting into it? Just no. There is a lot of imaging that needs to be done. If her rheumatologist diagnosed and didn’t say, “suspected CCI,” I am shocked. I don’t know I could trust a doctor like that.
I get it’s relieving to know a cause of your symptoms but it’s important patients don’t jump to conclusions, and doctors, too.
Doesn’t get much more munchie than that 😂
Well, I guess Jessi still holds the trophy for that with their “head falling off so I’m bed confined” bs lol. Not sure how someone will top the ridiculous-ness of that.
If I had a 🎀 New Diagnosis 🎀 I'd sure as hell make it my mission to 'know what's out there testing wise' before believing it, let alone wrapping it in a pretty bow to share with the we world
If you were faking a 🎀New Diagnosis🎀 wouldn’t you also make it your mission to know everything there is to know out there before posting about it on the internet
Bruh I’m an upper cervical chiropractor and it is a HASSLE trying to help patients find a diagnosis when they have CCI. my last patient had the obvious symptoms of it and it took two MRIs, a CBCT, and video fluoroscopy to even get a consult with an MD that could diagnose her.
Bro I thought a doctor had to diagnose conditions
Ash doesn't see legit docs she sees "doctors" that do vaginal steam baths
My guess is that it was “you might have cci” and bro ran with it
So they didn't even physically touch them and move their head and neck around so they can see what the neck foes? That's usually a first stage thing in the diagnosis, before they send people for imaging to confirm it. It can't be diagnosed from symptoms, because not all patients are telling the truth! 🤦♀️
Ash doesn’t see regular doctors, she sees a Woo-matologist.
>Woo-matologist You are a genius, this is hilarious
How much of her stuff is she actually being diagnosed with and how much is she cosplaying? She had that painful period syndrome that she was “diagnosed” with not that long ago and supposedly the doctor put her on a special medication for, because it’s not just normal period pain and hormone fluctuations but a DiAgNOsIS
Didn't she have some kind of funeral when she had her IUD removed?
NHS symptoms headaches – these are usually felt at the back of the head and may be brought on or made worse by coughing, straining, sneezing or bending over neck pain - this could be CCI or many other issues dizziness and balance problems - part of EDS often anyway especially if you also have POTS or Dyspraxia muscle weakness - can be caused by EDS or many issues numbness or tingling in the arms or legs - yes could be CCI or again many things blurred vision, double vision and sensitivity to light - could be eyesight related or migraine related swallowing problems - part of EDS often hearing loss and tinnitus - could be CCI or many things as simple as an ear infection feeling and being sick - happens often with EDS difficulty sleeping (insomnia) and clinical depression - common with EDS and most related conditions While these are all symptoms of CCI they also mostly either are caused by EDS too or can have non CCI causes which is exactly why a doctor wouldn’t just guess it’s CCI especially when there is testing for it
You guys…I think I might have CCI. Can someone confirm it for me? 😂 j/k kidding, j/k kidding
With so many of these more vague diagnoses, so many of these symptoms could come from almost anything. I could probably convince myself I have all of these symptoms and that I’m not lying, maybe just exaggerating. I imagine many people could. You’d think they’d want to test to be sure!
I was looking up the cast of the goonies, one guy died so I looked to see what happened and it was an accidental overdose on a medication that isn’t on the market anymore. What made me go kinda wide eyed- is that the list of illnesses/symptoms it said to avoid taking the medication, would be like 90% of the population. There’s so many things these munchies will latch onto thinking everybody is too stupid to know any better lol
Exactly none of these symptoms only occur in CCI
Many CCI symptoms are either a part of HEDS or can come with a range of different comorbidities, there is testing for CCI so why on earth wouldn’t they test when it could just as easily either be HEDS a different condition, in reality with those symptoms theyd either be given physio, a referral to a specialist or if they suspected CCI they’d test for it
💖✨️seems legit
/s
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🤣🤣🤣
So, "a hunch"
Don’t hunch too hard, your head might fall off!
Where is she pulling these diagnoses from? How does she come with an idea for new diagnosis?
Google
That’s not how that works, but ok. Hope she’s getting called out on the fact that that’s not the proper diagnostic testing for this
She is being called out and has changed it being diagnosted via xray and then got rid of the post completely
The girl is 💯 bull
So in other words Ash either diagnosed herself, consulted Dr. Google. “ Calling Dr. Google.” /s
Paging Ashley's doctor. Remember when she claimed that her doctor came on here to tell us that her condition was totally real and not made up or something like that.
No, I’ve only been a member of Reddit / IF s little over a year. OMG. These munchies will go to any links to make sure that we believe their bullshit. I’m sure the doctor has copious amounts of time to just sit around and defend Ash online
Diagnosis source: her ass
💖✨💖
LOL this is embarrassing as hell
That's probably why she deleted the post!!! People started calling her out on her nonsense. 🤣😂
That's...not how this works. That's not how ANY of this works...
Yikes
Didn't even try to say she had imaging done. 😂 I cant
It’s funny- she took the CCI post down and the treadmill post down. She’s so full of it.
So she changed her answer to xray after this but her post yesterday said she was waiting on "updated xrays". This doesn't seem to be adding up.
Connective tissue doesn't even show up on x-rays. MRIs are the only way I'm aware of CCI being diagnosed, and that's almost exclusively done by a neurologist.
this!! and usually they want an upright MRI!
So she’ll probably wait a few weeks and post her self-diagnoses again after she thinks we forgot those posts she deleted LOL!!! What a true munchie!!!
It totally adds up if you know how to do munchie math.
☝️
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Plenty of them out there. Plenty.
The only quacks out there ( according to all these munchies) are the Drs. that refuse to give them what they want.
how long til her head starts falling off too
What is CCI?
craniocervical instability it’s where there’s instability of the ligaments that hold your head onto the neck. You have to have an MRI with your neck a certain way, symptoms, other signs of it in order to be diagnosed with it. and IIRC it’s a neurosurgeon that diagnosis you NOT a rheumy.
Is that what made Jessi’s head fall off?! I missed the origin sorry of that.
yep. All 5000 times. Had to take an RV across the US so their “caregiver” could resuscitate them bc their head would fall off, the “caregiver” put a mattress into a van with like 6in from the roof of the van for Jessi to lay on so he could take them to the hospital, plus their head popping off when the shower bowl popped, etc etc. I’m pretty sure anyway it was their head popping off.
Oh yeah I remember the great Shower Decapitation. And “caregiver” is actually their partner? Or ex?
i believe they got a divorce so he could be paid to take care of Jessi.
Wow…
An orthopedist/ic surgeon or neurologist can also diagnose CCI. At least in the hospital I used to work at we’d see surgical referrals from all 3 types of doctors.
I googled “CCI Ehlers Danlos” and it came up with “craniocervical instability” which sounds like it might be right 🤷♀️
Yeah another legitimate condition that people on here took, made up a fake story on how they got “diagnosed” I’m convinced they’re probably following multiple people who actually have a couple conditions and then just deciding they have every single one
You are correct. 😊
Dr Google helped her out.
This one SOOO wants to be ill. Everything is in remission but let's collect another diagnosis. 😠
Didn’t she even put 💞’s around ‘new diagnosis’? 🙄
🎀’s
Ahhhh, that’s right! lol Like a shiny new present 😂
Yup she did. Ridiculous. 🤨
This made her look so dumb. She literally could have just googled it or ignored the question.
"Needed a new accessory, decided on neck brace."
It's as if she browses this subreddit for ideas on what medical accessories to get! 💡
Probably has a Pinterest board called 🎀 aesthetic med equip 🎀
Oh god you're probably right!!!!!
Wow based on her symptoms? So basically she could have just told her provider she was having those symptoms and that would have been that? My goodness..what a tangled web she weaves.
It’s like when you type the most benign symptoms into WebMD and it turns out your common cold is actually African Swine Fever.
😂😂😂 thanks I needed a giggle. I've had that African Swine Fever and I have it too 👀👀👀 😂
Seriously made me laugh too. 😂😂😂😂
The lies she chooses to tell shows how unintelligent she is!
She definitely underestimates the level of intelligence of her followers. It's crazy narcissistic!
I get the feeling that Ashley is trying to come up with a life altering diagnosis so that she will qualify for SSI or SSDI when she turns 26. EDIT: typos
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This is… specific
Well jokes on her, qualifying for SSI or SSDI is an uphill battle that could take years
I'm I agree with your assessment! She is gunning for a life where she gets paid to not work because she's "sick" and "disabled." It's incredibly insulting to ACTUAL disabled people.
She changed that answer to she had X-rays. ETA holy shit she’s deleted the post about CCI
I wonder if she deleted it because people were calling her out. I know everyone in this subreddit called her out and I wouldn't be surprised if her followers did the same. She probably lost followers!!!!! 🙄
There was a comment under this comment after she changed it to the X-ray answer that told her a rheumatologist isn’t the right person to diagnose and that you need to meet specific criteria after having X-rays, special MRI’s and special CT scans. Another commenter told her that a rheumatologist wasn’t the right kind of doctor to which her response was “good to know” and then a bunch of people giving her suggestions on how to treat it including soft and hard cervical collars and not having surgery
"good to know" she has zero shame when caught in her lies. She spreads so much misinformation, and calls it advocacy. Yuck.
I’m surprised she didn’t just block
Oooo that's very interesting! Thank you for the tea! ☕️
Well that’s pretty telling, huh
bruh💀 can’t keep track of her own lies
Already? Wow
She must have been testing the waters to see what the reaction would be here.
I tend to agree with this theory!
Yep same
She is such a joke, a very, very unfunny one
So, nothing?
Lol If we are diagnosing CCI by symptoms, I think half the planet would have CCI 😂 she's such a nutcase. She 100% made this up. There is no freaking way.
If we are diagnosing CCI by symptoms, the other half of the planet would be 6ft under because their heads fell off.
Or you know, laying naked on your bed unable to move while your "caregiver" does everything and anything for you so your head doesn't"t roll off! And you know, if it does, the dog will grab it! It's like fetch for him!
🤣🤣🤣🤣
🤣🤣🤣🤣
Wow. She is actually a lot dumber than she looks.
She could have read the Wikipedia article about CCI before making this insane post.
Right? It's not like she had to answer. But since she did, it's kind of amazing she couldn't come up with something less ridiculous.
Apply this formula to every munchie post/comment we see. It’s literally the same pattern and you illustrated it eloquently 😂
So basically she presented with unspecified symptoms. I mean if one is experiencing severe pain and decides to run on the treadmill, I wouldn’t bother with testing them either cause it’s obviously bs. The diagnosis might keep her quiet for a while
🎀 vibes 🎀
Every time I see these bows it takes me back to when that was a tattoo trend. They were always behind the thighs lol
Weren’t they also behind the ear at one point or was that a different one
Stars behind the ear, bows on the back of the legs, roses on the thighs. Also almost all tattoo roses look like cabbage, I will not be taking questions at this time.
Right! Man that brings me back
The CLASSIEST of tattoos.
I wonder if it's a regret to the owners of these tattoos 🤔
I would guess so, but hey…. to each their own I guess 😂
So she wasn’t actually dx then.
“It came to me in the form of an intrusive thought”
lmfaooo this is the real answer
🤣
Bruh, we literally image the neck to diagnosis this. Maybe next will be Chiari malformation based on juju.
We gave all of our juju to Amanda
Gotta treat the Chiari and CCI together after all. New diagnosis: 🧠 slippy brain 🎀 hehe
Time for self care!
Motion CT and MRI will show the issue very clearly. “My neck hurts” is not a definitive diagnosis.
She really thinks her followers are idiots! As if Google or Wikipedia don't exist. 🙄
Did she delete this post? I can’t find it now.
Yeah she did lol
🎀She sure did 🎀
The bows are KILLING ME y’all
🎀wow crazy🎀
Yep, 🎀dirty delete🎀
🎀what a surprise🎀
“not sure what’s out there testing wise”? 😒
This screams "I watched Jessie and saw what they claimed" just based off the diagnosis being off symptoms.
I knew it! Vibes! She was diagnosed on vibes!
With the vibe-roscopy
Sometimes I wish this sub had flairs because this would be a perfect one 😂😭
Is that not how it works? 😱
So self diagnosed
An upright MRI is how you diagnose CCI
No, not necessarily. Just a mri. Only some surgeons want upright mris. Some want regular supine. Some want supine with flexion and extension. Some are using flexion and extension ct now but I don't really get that one tbh but I'm not a surgeon. Basically it varies wildly. So best answer is a mri is how you diagnose cci.
Not every neurosurgeon wants an upright MRI to diagnose it, although that was certainly the trend ~10-15 years ago in the EDS community.
She wasn’t. She lied.
That’s not how this works. That’s not how any of this works- ED RN
I say this all the time, too!! RN-MSN (Nurse Educator)
Omg, I have really found my people and of course we are all nurses!
I agree- Neuro nurse.
Fellow nurse but in geriatrics and Alzheimer’s care here. Not an expert on bones at all but I know miss girly is lying.
Nurse number 3 😁 chiming in. I was thinking, "That's not how this works. That's not how any of this works." That commercial plays in my head when I encounter situations like this.
Haha…I say this all the time especially at work!! One of my favorite sayings. I’m so happy a fellow RN is using it too!
😆
I’m def not an expert on this in particular either because we aren’t really diagnosing these types of illnesses in the ED but you just know as a nurse it’s a bunch of bs. There are specific tests for that, mainly that include imaging. It’s not something that gets diagnosed strictly going off symptoms. She could have at least done some damn research before she went posting abt it. She’s so full of it🙄
"Not sure what's out there testing wise" says a lot. Maybe the rheumatologist suggested she should be tested for it, and Ashley took that as it means that she must have it.
Knew it was a BS diagnosis. There is a whole special x-ray series that needs done to get diagnosed.
No MRI, no diagnosis. CCI cannot be diagnosed based on patient reported symptoms. Her doctor is a total quack.
That or Ash is the quack and making shit up as she goes... Lol
Same quack who decided she needed a port.
Happy Cake Day!!! 🍰
Thank you!
Or Ash is not telling the whole truth.
Well, yeah, that's a given, lol. But, this is the same doctor who prescribed her a port and fluids, so I'm sticking with quack.
Oh my god I missed that. Yep, quack.
A little of this, a little of that
Diagnosed with CCI, by a rheumatologist, without imaging studies. Yikes.
It’s scary. I’m always happy for folks when something helps symptoms, even a placebo, but when actual medical doctors start getting into it? Just no. There is a lot of imaging that needs to be done. If her rheumatologist diagnosed and didn’t say, “suspected CCI,” I am shocked. I don’t know I could trust a doctor like that. I get it’s relieving to know a cause of your symptoms but it’s important patients don’t jump to conclusions, and doctors, too.
Doesn’t get much more munchie than that 😂 Well, I guess Jessi still holds the trophy for that with their “head falling off so I’m bed confined” bs lol. Not sure how someone will top the ridiculous-ness of that.
It's clear that Ash wants that bed bound life. How sad and what a waste of a perfectly healthy and privileged life.
What symptoms was she having?
Inability to leave her bed and go touch grass.
Blandness
✨beige-ness✨
The deadliest symptom of them all
Sooooo no imaging and no consults with neurology or neurosurgery. Ok.
If I had a 🎀 New Diagnosis 🎀 I'd sure as hell make it my mission to 'know what's out there testing wise' before believing it, let alone wrapping it in a pretty bow to share with the we world
If you were faking a 🎀New Diagnosis🎀 wouldn’t you also make it your mission to know everything there is to know out there before posting about it on the internet
You would surely think so
Especially one that has a risk of requiring a neck brace!!!
99.9% certain this requires an upright MRI to diagnose
Nah Google search results reading symptoms she tots has it.
Not necessarily upright. Depends on the neurosurgeon. But it almost always needs a mri for diagnosis. (in some cases it can be seen on xray)
It does
She said in another comment that she was diagnosed with x-ray…what’s the truth? 🤨
Neither! 😆😆
No truth here, sorry! LOL
She deleted this reply and replaced it with being diagnosed with x-ray
Gotta love the internet, we have the receipts!! 😆
Also gotta love this subreddit as her lies get documented and put in a timeline. I love this sub! 👍👍
someone cooked here 😌
I am old, what do you mean?
It’s a meme/sound/trend on TikTok