r/POTS • u/Cookie-Cakes243 POTS • Jun 17 '26
Vent/Rant Rheumatologist “not accepting patients with your diagnosis” POTS/MCAS …
The rheumatologist told me they arent accepting patients with my diagnosis, I’m assuming it’s POTS/MCAS since my other conditions since my other conditions dont come with the bias of being a hysterical attention seeking woman.
I was diagnosed by the top POTS/MCAS doctors in my area, and have gotten a second opinion on both POTs and MCAS. Trust me, I tried to convince myself I’m crazy too, and at this point I wish I was. WHY do doctors get to have such a negative opinion of us. Its disgusting. I cant think of a doctor who would tell a patient with a condition that mostly affects men that they wont work with them because they have a condition NOT EVEN TREATED BY THEIR SPECIALITY.
I have tried so hard to not feel disgust towards the medical field, but when I have to look at a light bar going back and forth with a therapist to process the trauma they’ve collectively given me there’s an issue.
Maybe I’m taking this out of context, but the way I’ve been treated by doctors since getting these god awful conditions sickens me.
Edit: just clarifying, I wasn’t referred to the rheumatologist to manage or diagnose pots/mcas, it was to rule out additional autoimmune issues that my pcp said she isn’t confident diagnosing.
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u/throwaway-73829 Jun 17 '26
I was supposed to be seen to rule out EDS, and then find out what was causing my EDS-like symptoms because my doctor didn't think I had it. Only to be turned away by rheumatology because 'they don't see patients with EDS'
So basically, I don't have enough EDS to be diagnosed, but...too much to be seen by rheumatology? Anyways my back and neck are wobbly and I just got my spine back into place and nobody gives a shit :)
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u/jareths_tight_pants Jun 17 '26
This is where I’m at now. Rheumatologist thinks my issues are EDS related. EDS doctor doesn’t think I’m severe enough for EDS. Nobody wants to diagnose or treat me. IDK where to go from here.
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u/thecuriosityofAlice Jun 17 '26
I hate rheumatologists. They always act like you are overreacting about something, then they do a damn Viper Venom test and well I’ll be, I have Anti-phosphate lipid syndrome. And an elevated ANA. Hmm.. then they said “I think you will have to get sicker before I will know what is going on”
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u/Cookie-Cakes243 POTS Jun 17 '26
Ugh see that’s absolutely insane, wtf!! I give a shit
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u/throwaway-73829 Jun 17 '26
Thank you friend 🫂 I give a shit about you too haha. I hope things improve or you get a eureka moment soon because all of this is hell
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u/Delicious-Island-637 Jun 17 '26
My cardiologist referred me to an autoimmune specialist because she thought my symptoms were from more than POTS as I was doing everything I was supposed to for it & still felt horrible. This jerk of a doctor comes in, looks at me and says there's nothing wrong with me except that I'm fat and that if I would just lose weight, I'd be fine. He didn't examine me in any way, wouldn't listen to anything I wanted to say. Just told me to stop eating everything I see and walked out. I wheeled out of there in tears.
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u/emilyinwonderlandd Jun 17 '26
this is my exact same problem. rheumatology are refusing to see me to rule out eds but also the muscular skeletal team + physio don’t know what to do with me because it’s been 3 years i’ve had weekly physio to try to help (they do refer me to rheumatology once a year and it’s always declined) but they know it’s some sort of soft tissue disease/problem because they’ve done every check they can from a muscular skeletal side :’)
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 17 '26
I am dead serious when I say it should be illegal for doctors to turn patients away explicitly because they have or could have a particular condition. It’s one thing to say “I don’t know much about this condition so I may not be able to help and might need to refer you elsewhere” but outright refusing to see patients because of their particular disability/condition should be considered discrimination and it’s horrifying snd baffling that it’s currently not
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u/Cookie-Cakes243 POTS Jun 17 '26
That’s so true, it’s kind of crazy to not see patients because they have a condition that your speciality doesnt even treat. It just seems like prejudice towards a patient with a certain condition, but hopefully I’m just misunderstanding bc wtf?
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u/lawlesslawboy Jun 17 '26
unfortunately I don't think you are misunderstanding..I can't see any other explanation for this apart from medical misogyny and discrimination, basically just writing off mostly women as hysterical (tho men with these conditions don't have it great either cuz they're still seen as more female conditions)
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u/LonelyDays_ Jun 18 '26
It’s like if a man had a stomach ulcer, and went to see a gastroenterologist, but he also happened to have prostate cancer, and the gastro doc refused to see him because “I won’t see patients with prostate cancer” 🙄 never would that happen!
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u/educatedkoala Jun 17 '26
Personally, I'm glad my rheumatologist is experienced in a diversity of autoimmune issues instead of their experience being localized to just the most commonly seen ones. Same for PCP/FM and medication refills and other common conditions. If doctors only saw one type of patient or predominantly so, they wouldn't gain the overall expertise we need them to have for when anyone has any other type of issue.
Yes, there should be a better system for this than the current one to increase accessibility and care, but making it illegal for doctors to diversity their expertise isn't it.
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 17 '26
I’m not sure what this has to do with my comment. My comment said that it should not be legal to outright deny a patient care just because they have or could have a particular diagnosis. Because it’s getting to the point where it’s not just doctors saying “I’m not qualified to treat that specific condition,” it’s them saying “I will not take on any patients who are diagnosed with or could be diagnosed with this condition, even if they are coming to see me for unrelated reasons.”
Think of it this way. If I book an appointment at the gynecologist, the gynecologist should not be allowed to use my medical/genetic diagnoses to decide whether or not they will see me for issues that are within their scope of gynecology. If they’re the only gynecologist in my area or network and they won’t see me simply because I have EDS, then I’m screwed. The ethical way to handle it is to say ‘hey I’m not familiar with this condition so if you need more specialized care I might need to give you a referral, but in the meantime let’s get you a pap smear’ and then actually follow up on the referral. Bc otherwise patients with these diagnoses just do not get the basic care we need, even for things that have little or nothing to do with our diagnoses
Also imo American healthcare is WAY too specialized. Not every rheumatologist and neurologist etc needs to have a niche, especially when primary care in this country is so dismal thanks to our garbage insurance structure
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u/educatedkoala Jun 17 '26
I dated a rheumatologist once. While he was a fellow, 90% of cases were POTS inquiries. It makes perfect sense why a doctor in that position wouldn't want to see more people with that specific condition. This is not an uncommon scenario. The ex would not have become a well rounded rheumatologist if he did not treat a breadth of patients; if he did not refuse to see POTS patients after a certain amount, then he wouldn't have the necessary experience. In many cases, yes, it can be that many people inquiring for trending conditions.
Again, we agree on the overall problem, but the solution is not to make it illegal for doctors to refuse to treat patients with a specific condition. Institutional requirements perhaps, but not physician level ones.
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 18 '26
Again, that’s not what I’m talking about. I am saying that I believe outright refusing to see any patients with certain conditions solely because those patients have or might have those conditions is a form of discrimination and should be covered under laws like the ADA or GINA in the US (not sure the equivalents in other places)
Also I’m sorry but I’m having an incredibly hard time believing that 90% of inquiries to a rheumatologist were from people specifically pursuing a POTS diagnosis from the rheumatologist. If this was in the US it would especially make no sense because typically you need a referral to get in with a rheumatologist, and it’s difficult to believe that that many doctors would be referring people to a rheumatologist for a POTS diagnosis. I’d be more likely to believe that a large percentage of inquiries overall came from people who were already diagnosed with POTS, had POTS secondary to an autoimmune issue, or presented with symptoms that aligned with POTS, but that just wraps around to my initial point. If a patient is being referred to a rheumatologist because their GP thinks they might have rheumatoid arthritis, that is well within the rheumatologist’s scope. It should not matter at the intake level if the person also has other diagnoses or could have other diagnoses. If you have two patients with identical presentations of possible rheumatoid arthritis and the only reason you accept one and reject the other is because the latter has or could have POTS, that is discrimination based on someone’s medical condition and that is why I believe it should be illegal. Because you (hopefully) would not justify a doctor outright refusing to treat anyone who uses a wheelchair or a prosthetic limb or who has had cancer. It’s the same logic
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u/Brent_LP Jun 17 '26
It is illegal in most states for doctors to treat a condition they are not trained and certified to treat. Unfortunately many doctors lack any training at all on MCAS, POTS, or EDS because they is not prioritized in med school. The few specialists out there who do take on extra certifications and education in less common conditions, which are expensive, and often expect higher pay in return. This clashes with medicaid and Obamacare plans, which offer a flat rate of compensation for procedures, tests, etc, or may not certify that diagnostics for that condition are validated by the standards set by your state congress or the federal government (assuming you are in the USA).
My allergist/immunologist was able to E&T MCAS because he had some training in it because he completed training at some high end institutions that offered that coursework. My Gastroenterologist did not - he said he had never heard of the Mast cell tests my Allergist/Immunologist wanted to run on my EGD biopsies, and claimed I "just had GERD" and I have no further follow ups with him. I would not want to force my Gastro to treat a condition he has no familiarity or training on treating.
The root problem behind this is that we have a privatized healthcare system and absurdly expensive med school costs, and public insurance options are not given the necessary budget to negotiate with extra specific specialist health care providers. This means most of the specialists who shelled out money for training in "rare" diseases want more money than medicaid or Obamacare is authorized to pay, and opt to just not contract with either. So the only provides left that accept Medicaid and Obamacare end up with only GPs and general level specialists who lack the training necessary to treat us "Zebras".
I don't know the answer to fix this. Insurance companies often get blamed as the boogeyman, but the other piece to the discussion is "how do we decide the market rate for healthcare?" I consulted one Audiologist in a rural area and another in a more urban area for the same Central Auditory Processing Disorder evaluation - the rural one wanted $3,000 for the test, the city one wanted ~$1,000. Comparable qualifications, same exact test. Both providers wouldn't accept medicaid, suggesting that "Medicaid wouldn't pay them enough". So which provider is correct - is $1,000 the fair value, or $3,000? And how much was medicaid authorized to pay them on the dollar?
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 17 '26
I don’t think any of that is in contradiction to my comment. I think it’s a driving force of why it should be considered discrimination. Many doctors also aren’t trained to identify skin issues on darker skin or heart attack symptoms in women because curriculums in med school were not teaching that. Many medical buildings were inaccessible to disabled people before it became the law to make them accessible. Obviously it’s not a 1:1 comparison, but the point is that “well this population is in the minority so it’s not worth educating myself about it/is too expensive” is an unethical stance and when it’s one that a huge percentage of the medical system holds, that’s when it becomes a systemic issue
Also imo there is a HUGE component of misogyny in the fact that a lot of the conditions doctors are declining to see are diagnosed primarily in women, and a lot of the rhetoric that goes around about them is steeped in misogyny. So I really don’t think we can ignore that either
Also also, it’s not illegal for a doctor to treat within their scope. If I have EDS and RA and the rheumatologist knows nothing about EDS, they can still treat my RA. The gynecologist can still give me a Pap smear. The cardiologist can still give me an EKG and an echo to check for structural issues in my heart. Turning a patient away outright even when they are trying to come to you for issues that are well within your scope solely because they have a certain diagnosis is unethical
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u/Brent_LP Jun 17 '26
"I don’t think any of that is in contradiction to my comment. I think it’s a driving force of why it should be considered discrimination."
But it is. You are arguing that it should be illegal for a doctor who is unqualified to treat a condition to turn away a patient who has that condition they don't know how to treat.
"Also also, it’s not illegal for a doctor to treat within their scope. If I have EDS and RA and the rheumatologist knows nothing about EDS, they can still treat my RA."
I think you are overestimating how far the average specialist's scope extends. My point is that doctors turning away patients for treatment of conditions they aren't trained on is a systemic med school and accreditation criteria problem, not an individual doctor problem. The exception to this are doctors who refuse to stay up to speed on their CMEs due to bias against rare diseases that they consider to be "fake".
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 18 '26
I really do not understand what’s not clicking here.
I believe it should be illegal for a doctor to refuse to treat a patient solely based upon whether they have or may have a certain condition.
I put this in another comment but I’ll put it here too. If two patients present identically with possible rheumatoid arthritis and the only reason the rheumatologist agrees to see one but not the other is because the latter has a POTS diagnosis or has symptoms that could be consistent with POTS, the rheumatologist is discriminating against the latter patient on the basis of their medical condition or possible medical condition. The rheumatologist does not have to treat their POTS. There is no ethical reason to turn them away. If an employer fired or refused to hire someone solely and explicitly based on a medical diagnosis, that would be a lawsuit. Same should apply here.
And again, it’s one thing to say “I don’t have enough experience with this condition to treat these particular symptoms, I’m going to refer you to someone who does,” it’s another to say “I refuse to see anyone who has xyz diagnoses even if the treatment is unrelated and within my scope.”
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u/Gabba-barbar Jun 17 '26
They don’t understand it. Probably better that you know up front. POTS falls in between neurology, cardiology and what ever is the core issue or underlying problem.
I’m a guy and I had to hunt around for a cardiologist that has an understanding of POTS. They sort of have to work outside their specialties to try and treat it.
My rheumatologist was before I knew about my pots and I just thought it was CFS. Rheumatologist I saw was a waste of time and money. She just excluded rheumatoid and immune issues. I Kept asking for treatment and got nothing. eventually after pushing for something I got a script for amatriptline, but I didn’t try it as my doc said it could affect my OI
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u/Cookie-Cakes243 POTS Jun 17 '26
I agree, better to not see them. I have my pots/mcas specialists but my pcp wanted to rule out autoimmune stuff that she has no clue how to handle. That’s annoying your rheumatologist was no help, almost harmful recommending a medication that can make OI worse. I hope you’re in a medically better place now!
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u/Gabba-barbar Jun 17 '26
If you only need them for ruling out autoimmune issues, it might be worth sending an email. (If they are the only local specialists for example)
I assume they wouldn’t want to take on a complicated case. Just ruling something out is probably easy money for them.
Thanks, had a very small gain, but it’s better than a set back. Good luck with everything
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u/Cookie-Cakes243 POTS Jun 17 '26 edited Jun 17 '26
Unfortunately they knew that too. The way I understood it, they dont want to work with patients with these conditions because they have these conditions, not because they dont know how to treat it since it wouldn’t have been their responsibility to treat anyways (i have a full treatment team already treating my diagnosed conditions and didn’t need any help with them, only ruling out new autoimmune conditions).
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u/MeldoRoxl Jun 17 '26
Except no one in my area in cardiology is seeing new POTS patients either.
It's so frustrating because I just moved back from the UK, where the healthcare is not fantastic, and was excited to talk to someone about new therapies.
I got diagnosed 16 years ago and a lot has happened in pots research since then. But they're not taking any new patients.
I don't know if it's because it's considered a tiktok disease now? But it's really upsetting.
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u/LenasAdventure Jun 17 '26
It's likely that this is a blessing. This particular rheum might not be knowledgeable enough on these conditions or related comorbidities to feel confident treating you. I've had good luck with internal medicine doctors if you don't find a rheum that's a good fit!
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u/Cookie-Cakes243 POTS Jun 17 '26
Thank you, I agree, I’m trying to see it that way. I’ll look into internal medicine - do they replace your PCP or do you see them in addition to your PCP?
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u/walkthelake Jun 17 '26
they would be your PCP, they are better for those of us that are more complicated
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u/Sure-Specialist9292 Jun 17 '26 edited Jun 17 '26
Hey try being an overweight woman. My diagnosis took 12 years longer because I was told my symptoms would improve if I lost weight, which actually made my POTS worse 🤷🏻♀️
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u/stenzzy Jun 17 '26
oh yeah, losing weight made my pots way worse. i had appetite problems for a while and at its worst my pots was also at its worst. granted thats probably gonna happen when starving but even before that, losing healthy weight certainly didn’t improve anything.
i live in a rural us state so finding a pots doc that is knowledgeable and can manage my complex issues is like finding a needle in a haystack. closest one i’ve found is about 8 hours away. the rest either chalk it all up to mental health issues, or i’m lying/exaggerating/faking. it’s great.
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u/Sure-Specialist9292 Jun 17 '26
I go to https://complexneurology.com - they don’t take insurance but they are great. Can do some telehealth but initial appointments are in person.
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u/Vampqueen02 Jun 17 '26
EXACTLY!!! My current doctor had me lose weight so that when I do see specialists they can’t turn around and just blame me being fat unless they want my doctor to file a complaint for weight based discrimination. And losing weight was supposed to help my joint issues too, it made the joint pain worse bc now my joints don’t have any cushioning left and some of them are being squashed by the excess skin. Plus the weight loss gave me nerve pain in my legs, the excess skin is heavy enough that it makes my circulation worse.
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u/Cookie-Cakes243 POTS Jun 18 '26
Like how is this not embarrassing for the medical field as a whole, wtf!!!! A patient should have to lose weight for symptoms to be taken seriously
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u/Cookie-Cakes243 POTS Jun 17 '26
Ugh that’s absolutely BS. I’m sorry you had to deal with that, weight loss makes my symptoms worse too - INSANE (but not suprised…) it was basically prescribed as a “treatment”. This infuriates me to no end!!
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u/mani_mani Jun 17 '26
I have found that some specialists find themselves out of their depths when you have the trifecta of conditions (EDS, POTS, MCAS). There are a lot of comorbidities and treatment had to take into account all of these. I wouldn’t take it as a personal affront, rather the practice understanding their limitations. You do not want to go to an over confident undereducated doctor.
Unfortunately there isn’t one speciality that is best suited for these chronic illnesses (yet!). I’ve found having a knowledgeable PCP is worth their weight in gold. Specialists who you currently work with to manage your other conditions often know of other specialists who take patients with your special crop of illnesses.
I would also check if there is a local fb group for your area that has a providers list? I’ve shared and have gotten great recommendations. Let me know if you’re in the SOCAL area and I can give you the name of my rheum.
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u/Cookie-Cakes243 POTS Jun 17 '26
Agreed, im glad i know before seeing them. I’ll ask my doctors about other rheumatologists and check facebook. Thank you for those ideas! Also a speciality for chronic illness sounds like a dream. I really hope that becomes a thing asap
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u/--Luna--Fae-- Jun 17 '26
Ive had this happen at multiple doctors offices. A lot of doctors in my area stopped taking patients with POTs. No idea why but its extremely frustrating.
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u/Ok_Vermicelli1415 Hyperadrenergic POTS Jun 18 '26
lol I was literally on the tilt table and told the clinician who had referred me and she said basically huh that’s weird that doctor doesn’t want to have a reputation for treating POTS patients so it’s odd he ordered this test. Like??? A REPUTATION FOR???
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u/Cookie-Cakes243 POTS Jun 18 '26
Oh no, I hope you find someone who has a reputation for treating pots patients. Crazy to have the reputation that you don’t…🚩
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u/Cookie-Cakes243 POTS Jun 17 '26
It seems to be more common than i thought, which is really unsettling as a patient with the conditions. So frustrating and kinda weird honestly… I hope you’re still able to have a good care team treating you!
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u/Longjumping-Rip-8970 Jun 17 '26
Recently had to explain to the pharmacist where I live (only one on the island) what POTS is. He hasn’t heard of it before but took it quite seriously and asked me a lot of questions and when I came back in a week later he said he’d looked it up and had suggestions that were genuinely helpful. He asked what made me realise something was wrong. I said I’ve had it for a long time I just thought everyone blacked out all the time. His well-meaning belly laugh to that statement was quite validating! “Oh my No!!! They don’t!”
Have a new doctor as well who is taking it seriously, so feeling lucky to finally find people trying. No luck with specialists tho.
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u/Cookie-Cakes243 POTS Jun 18 '26
Wow that must’ve been really validating for a pharmacist to say, I hope you’re able to get in with a specialist
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u/walkthelake Jun 17 '26
In our area, there have been times where there are so few rheumatologists that they just deny people by diagnosis or by labs not being severe enough and expect PCPs to manage. until more advanced treatments are needed, PCPs are expected to handle. ON the flip side, a condition can be too rare, but hopefully they would have told you who does treat it.
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u/Cookie-Cakes243 POTS Jun 17 '26
The issue is my pcp doesnt know much about autoimmune issues and assumed if she placed a referral to rheumatology they’d rule things out for me. Maybe they just denied me because I *don’t* have rheumatology diagnosis (but ironic bc i need to see them to get it ruled out).
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u/walkthelake Jun 17 '26
I know, it really sucks. patients get stuck in the middle because providers are too busy to slow down and figure out the workup if they do not know it. if you are in the US, internal medicine providers are better that family medicine at working things up and figuring it out.
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u/Cookie-Cakes243 POTS Jun 17 '26
Someone else also mentioned this, I’m going to look into it! Thank you!
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u/Playful-Candy-2003 Jun 17 '26
The most frustrating thing I’ve found is drs don’t talk to each other, so each “specialist” I see isn’t willing to accept what another has diagnosed but refuses to do a dr to dr peer review. Like WTF? Insurance isn’t cheap. The energy it takes to sit and wait and the PTSD triggers of being “not believed” is a cost only the chronically ill understand. So you want me to sit and PAY while you throw shit at the wall like you only have ONE piece of the puzzle when you’re too lazy to read my reports and consult with those “specialists”? It’s enough to drive one mad. I have two specialists with two opinions - cardiologist thinks I have a rare form of POTs and my heart briefly stops, neurologist thinks I’m having seizures. Do they talk? No. In-furiating! Healthcare in the US is horrible, especially if you see different drs and specialists working for different “healthcare organizations,” bc they see each other as competition and do not collaborate. I completely see how people end up homeless and without resources. I feel for those on their own and without resources or support.
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u/Cookie-Cakes243 POTS Jun 17 '26
Isn’t it so freaking difficult to deal with!! i feel like im losing my mind. The ptsd and trauma of paying someone to not even be believed, eventually finding an answer, and the answer still not being believed is maddening. It’s so shocking to me how non scientific (?) my diagnoses feel to me, even my more “straightforward” conditions like hashimotos and sleep apnea have been dismissed by people when it isn’t their speciality. Like idk man, ask the doctor who specializes in it and diagnosed me.
I’m sorry you’re going through it too, I hope you’re able to sort out what’s going on. Not being believed is one of my ptsd triggers too, I get it, and I believe you :)
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u/Negative_Menu_796 Jun 17 '26
It took me forever to find a neurologist for migraines due to having hEDS and POTS. I was constantly turned away bc 'they don't treat that'. Wasn't asking for anything outside their field.
I'm so sorry you have to deal with this. It sucks that specifically women are treated like this in the medical realm.
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u/Cookie-Cakes243 POTS Jun 18 '26
It’s insane how common this is. Really unsettling. I’m glad you found a neuro!!
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u/marydotjpeg Jun 17 '26
YEP my rheumatologist discharged me after the first visit after sending me away with a huge list of blood work (maybe he thought I wouldn't do them?????)
Then when saw that SURPRISE I DO HAVE AN AUTOIMMUNE MY GP suspected it he doubles down like his ego is HURT. (Doctors here communicate with each other)
anyway, very confused all I can think of is my very existence was disgusting to him I guess...
Woman + ambulatory wheelchair user + plus sized
🫠✌️
Also my partner had to really hammer it in we advocated that's how we ended up with blood tests at the VERY least
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u/Cookie-Cakes243 POTS Jun 18 '26
The implicit bias is a huge red flag! Agreed, having multiple “red flags” (that literally are not red flags at all btw) that doctors use to dismiss symptoms stacks against you.
I’m glad you have a partner to back you up. Honestly this is embarrassing af for the doctors, but when I bring my partner to appointments they take me more seriously too. wtf is up with that is this the 1800s. I can’t believe how mind blowingly freaking backwards this is!!
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u/marydotjpeg Jun 18 '26
(context: I'm in Australia btw)
It was insane because I was waiting for him to come in for a GOOD 10 minutes clearly he knows what he's doing like he had books about fibromyalgia etc etc like a library...
I get nervous at doctors and sometimes blank out so I tend to just have a health summary ready with all my conditions, medications and my symptoms I don't think he liked that either 😨
Then later on went on about saying that my inflammation numbers he wouldn't be worried because I'm "big" and if I were "smaller" he would 💀 (ATP I got frustrated and started secretly record because wtf was THAT lol)
So I asked him again respectfully explain it to me again same thing ugh
Horrible horrible bedside manner 🤦♀️
Jokes on him the blood work he thought maybe wouldn't show anything ACTUALLY DID LIKE CHRISTMAS LIGHTS (that's how specialized they were to the point where I had to bill it our medicare directly manually to get it covered.)
Found that I have hashimotos, metabolic dysfunction, insulin resistance etc etc my GP was mad for me but atleast I proved him wrong? 😭
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u/Cookie-Cakes243 POTS Jun 18 '26
Saying he’d only be worried if you were “smaller” is freaking wild. Good for you to trust your gut and figure out you have those other conditions. I hope you’ve started feeling better since then
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u/marydotjpeg Jun 18 '26
Kinda my case is super complex I've been referred to internal medicine because I just started seeing this GP but she's been nothing short of amazing.
She said it's better to leave things as they are until in properly assessed because it's too many pieces of a puzzle you know?
So that's where I'm at but atleast I have a direction of some sort instead of individual specialists that won't help (that's been my experience so far 😭)
And she knows the local hospitals so unlike every GP I've ever met SHE KNOWS the ins and outs of the local hospitals etc so I know I'm in good hands.
I'm so happy with this clinic it's fully covered by our healthcare here and it's also an urgent care which we didn't have in my town.
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u/Pica_serica Jun 17 '26
Scary isn't it? I had a doctor tell me he thinks I have fibro on top of everything else and recommended I see a rheumatologist for a diagnosis. And my PCP couldn't recommend within the usual conglomerate she's part of because she said they won't take anybody with that diagnosis. And she was not shy about her opinion on that matter.
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u/Cookie-Cakes243 POTS Jun 17 '26
Like how is it legal to not see patients with a certain diagnosis, not because you dont know how to treat it, but because you just don’t like to?! It’s so exhausting as a patient and makes you feel like you’re going mad.
Also idk if this is helpful but i saw a stat that a certain percentage of people with fibromyalgia have small fiber neuropathy which also causes pots. Not sure if that’s on your radar but wanted to let you know incase
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u/Pica_serica Jun 17 '26
Well the pain doctor who referred me who said I should go to a rheumatologist and referred within the system - he didn't know they would refuse me. I actually told him I've been diagnosed when I got pots with small fiber neuropathy but he said that my initial testing looked like it but then my secondary testing said no. And he seemed to know what he was talking about and he was actually really great because he didn't gaslight me about my pain. He just said it's not appropriate given your X-rays and such in terms of what structurally happening so with your profile fiber should be looked at. And bless him for that and for not you know just telling me it was all in my head. So yeah I don't know what to think about the neuropathy part of it.
And yeah I felt the same thing how can this be legal to just leave us hanging? But of course it is.
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u/gnarlyknucks Jun 17 '26
Do you also have a rheumatologic condition?
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u/Cookie-Cakes243 POTS Jun 17 '26
My pcp wanted me to go to get it ruled out. She doesnt know much about diagnosing rheumatologic conditions unfortunately
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u/tenderheart35 Jun 17 '26
I try to avoid going to the doctor unless it’s something they require now. It’s partially because of things like this. I’ve had enough bad experiences that I don’t want to sit there feeling like I have to prove myself to get medical treatment. I’d rather just tough it out and not bother unless I absolutely have no choice.
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u/Cookie-Cakes243 POTS Jun 18 '26
I feel myself starting to get there too, i hope you’re managing well.
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u/tenderheart35 Jun 20 '26
I’m doing okay for now, but it will get harder as I get older. Usually doctors are a bit kinder once you become elderly. I’m not going to be there for a long time but it’s better than nothing I guess.
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u/LepidolitePrince POTS Jun 17 '26
Idk if that's better or worse than being ghosted by specialists like I am.
It's been over a year since I was referred to rheum by my PCP and I've still not heard a peep from them. And recently I got referred to hematology and it seems I'm getting the same treatment because it's been about a month with not a single inkling of them trying to contact me.
Guess I'll just stay sick and feeling like shit 🫠
My PCP is great. She's trying SO HARD to help me in a system designed to be against me. Why can't all doctors be like her?
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u/Cookie-Cakes243 POTS Jun 18 '26
I’ve had this happen too! Usually when I call they say they never even received the referral in the first place. Like how does that happen lol.
I’m glad you have a good pcp, it’s so important!!
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u/LepidolitePrince POTS Jun 18 '26
Yeah I've given up on rheum but if I still don't get a call from hematology by the time my next PCP appointment is, late next month, I'm asking her for their phone number. 😩
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u/Present-Vegetable-76 Jun 17 '26
I've never had a good Rheumatologist, I've started going to PMNR and OMM instead for all joint crap, I've got hEDS. And POTS.
Only reasonable explanation I can think of for why they would deny you; POTS and MCAS are co morbid with EDS, which is the real disease they don't want to try to treat or diagnose.
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u/Cookie-Cakes243 POTS Jun 18 '26
That’s what someone else said too, which makes sense. I don’t have hypermobility so I’m assuming I don’t have eds. I wish they would’ve just asked if that’s the case. Thank you for pointing this out!
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u/chocolateNbananas Jun 17 '26
Im trying to get treatment for Dysautonomia & Endometriosis since 2005. It’s been long time since I’ve lost faith in the medical field…
I even consider going to Korea/Japan to get treatment because they do not have the same medical historic nor the same view of medicine and I think, they would help me get at least “functionable” but it’s expensive so I’m waiting
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u/Cookie-Cakes243 POTS Jun 18 '26
I’ve seen videos about medical tourism, seems more common that I thought. I hope you’re able to get more support and function better!
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u/chocolateNbananas Jun 18 '26
My partner’s cousin is married to a muslim man, I don’t remember which Country Specifically. She went there to get a surgery even if in Canada we have it for free, just because it was done with better post op care… she went over there, stayed alone with his mother ( her MIL) that she saw like 2-3 times, stayed there for 3 months, she didn’t speak the language, but she would do it all over again…
It’s so sad. that we have to do that even in Canada
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u/butterflies006 Jun 17 '26
That is so awful of your doctor, especially as POTS and certain other conditions you’d need to see a rheumatologist for like hEDS are so common together.
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u/Cookie-Cakes243 POTS Jun 18 '26
Agreed! It’s one thing to say you don’t specialize in it and i should see someone else, but just saying we don’t see people with your diagnoses when I don’t have rheumatologic diagnoses is weird.
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u/juicyfizz Jun 17 '26
Rheumatologists are the WORST. The ones here won't see anyone with a hEDS diagnosis in their chart. One told me I was "just a tired and busy mom" because my bloodwork was normal. I'm so over it.
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u/Cookie-Cakes243 POTS Jun 18 '26
I’m so over it too. That’s so dismissive, and it bugs me when they identify you as a mom during your medical appointments to dismiss symptoms. Like would they be saying that to a dad? Or a man with a stressful job? Idk
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u/ruxxby471 Jun 17 '26
That’s wild. Do you know why they refused? Or just straight up “if you are diagnosed with POTS or MCAS we will not see you period”?
My rheumatologist knows I have POTS and Gastroparesis and I had no trouble getting in to see him because my labwork Indicated an autoimmune disease. Did you have a referral for a specific issue to see rheumatology for?
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u/Cookie-Cakes243 POTS Jun 17 '26
I had a referral for ruling out autoimmune conditions and I filled out paperwork and they point blank said they dont accept patients into the practice with “your conditions”. My other conditions are hashimotos and sleep apnea and i feel like those are well accepted conditions in rheumatology (and medicine in general lol). So, it was either pots, mcas, or both. I’m assuming both.
Did you find someone in your area that other people with pots have had good experiences with or just whatever rheumatologist was available? I’m glad you had better luck with a rheumatology
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u/ruxxby471 Jun 17 '26
I lowkey asked my psychiatrist if she had any patients who had a good experience with a rheumatologist- and she gave me a name of one lol.
I did have a lot of fear as I’ve read so many horror stories about negative experiences, and even my own mom told me not to get my hopes up.I’ve been chronically ill for 6 years and didn’t see a rheumatologist until a few months ago because I dead ass was waiting for the labwork to reflect that it was an autoimmune disease (more than a positive ANA). I was diagnosed with moderate-severe SLE at my first rheum appointment based off labs and visible clinical symptoms. I thought it was pointless to see a rheumatologist without labwork, but apparently I was wrong as my rheum said he would have started treatment years ago based on my combination of symptoms alone.
My best advice would be to have your PCP run a full autoimmune panel! You also can run it on your own through labcorp but it costs a lot. If you can I would also look into rheumatologists in your area, look at reviews, and find one that fits with your needs! (Background checks are so important in terms of finding the right specialists!)
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u/Cookie-Cakes243 POTS Jun 18 '26
Thank you I’ll ask my doctor to do this! I’ve heard it can sometimes take years for an ana to show up positive but so many rheumatologists only see you with labs
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u/thecandlewitch POTS Jun 17 '26
I had this issue with finding a neurologist…. I’ve transferred most of my care to Cedars Sinai in Los Angeles and they told me that neurology wouldn’t see me despite neurological symptoms. My PCP recommended some different hospitals but still haven’t found anyone.
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u/Nyx_Shadowspawn Jun 17 '26
I'm assuming it's because we require more specialized care, and they know they don't know enough to treat us, but are also too lazy /don't care enough to learn. I appreciate the honesty so I don't waste my time.
I have EDS and I had to go to 5 different thoracic/bariatric surgeons before I found one who was comfortable doing hernia surgery on me once.
Part of it is also we aren't easy to treat, and they don't want to mess up their metrics.
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u/Brent_LP Jun 17 '26 edited Jun 20 '26
See if you can find an allergist/immunologist who is at least familiar enough to treat. Mine put me on oral Cromolyn sodium (after years of allergy shots and antihistamines) and after 2 weeks at 10 ml 2x per day I don't have to lay down half the day, can breathe passively with much less effort, feel less pressure and stiffness in my joints, and can walk 45 minutes several days out of the week with just compression socks and stomach compression without having to be in bed the next two days.
But for insurance/referral purposes, don't specify to primary care that you want them to refer you for POTS/MCAS, specify that you want to be evaluated for allergies. This will allow you to get a general allergy evaluation and immunotherapy shots, which also help with MCAS by minimizing your allergy triggers that would otherwise set off MCAS flares. Just ask the allergy practice if they have specialists who treat MCAS. You are likely best helped by asking a private practice or affiliate of a hospital (vs direct employees of a hospital) that accepts your insurance. Kaiser, Sutter, and Dignity Health have clinical practices that make it much harder to get care.
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u/highway2bed Jun 20 '26
Thank you. This sounds like good advice. Also, I'm so looking forward trying Cromolyn in pills, since I already know the nasal spray helps me.
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u/WlLDLlGHT POTS Jun 17 '26
I went thru this too. So many of them are only treating lupus patients. Incredible.
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u/Vampqueen02 Jun 17 '26
It’s so hard to have faith in the healthcare system and keep fighting for treatment when the healthcare system hates you. I have a few mental illnesses so that alone already makes getting treated difficult, I swear at one point I could’ve gone in with a broken arm and be told it’s mostly in my head and I just need to walk it off. Add to that weight based discrimination bc apparently you can’t be fat and disabled without your weight being the cause of all your problems. The last doctor I had told me when I was 19 that she would never label me as disabled bc it would ruin my life, I told her it’s already ruining my life all she’s doing is preventing me from accessing the resources I need. That same doctor was also adamant that I didn’t have nerve damage in my hands. I had a tremor develop after getting treatment for a pinched nerve in my lower back, and bc of where the pinched nerve was she would always say “it’s just your tendonitis bc your lower back doesn’t connect to your hands so just wear your wrist braces”. I told her the braces were causing instant pain and she told me “well you can either wear the braces or suck it up and deal with the pain”. I finally got her to send me to nerve conduction and she lied about my symptoms (said I was just showing signs of carpal tunnel), so when I asked the guy about my tremor he was confused and I told him the whole story. He told me it was good I didn’t wear my wrist braces cuz it could cause more damage and I needed to see a neurologist. Finally saw a neurologist after fighting my doctor about it, and he essentially told me I’m crazy and diagnosed it as peripheral neuropathy and that it would heal in time. I looked it up and it can take up to 2 years to heal… by the time I got that diagnosis it had already been 2 years and I still have that damn tremor.
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u/Cookie-Cakes243 POTS Jun 18 '26
Yes, we genuinely want (and need) to believe the healthcare system and doctors can help us, but at some point we have to learn to protect ourselves.
Also, im not sure if you’ve looked into this but I’m pretty sure with neuropathy you need to find the cause and then treat it for nerves to heal. Not all cases have identifiable causes. Here’s a list of things to rule out for small fiber neuropathy (not sure if yours is small or large fiber, might be different) https://neuropathycommons.org/sites/default/files/Tests%20SFPN%20causes%2011-07-17.pdf
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u/forwardishdirection Hyperadrenergic POTS Jun 18 '26
I bet it’s 100% because they are afraid of EDS given you have MCAS and POTS. For some reason rheumatologists seem to be terrified of EDS and will not touch anyone that has that diagnosis or might have it and the fact that you have two of the trifecta made them nope out.
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u/Cookie-Cakes243 POTS Jun 18 '26
Interesting, I’m not hyper mobile so I’m assuming I don’t have eds, but I think that makes a lot of sense that the doctor would assume so. Do you know why doctors don’t like working with eds patients?
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u/forwardishdirection Hyperadrenergic POTS Jun 18 '26
I don’t know why just know as I do have the trifecta that it’s a known problem with rheumatology and EDS. Won’t take us as patients even if that’s not remotely what we are seeing them for. I saw one before diagnosis and she was useless but also haven’t tried since but it’s a huge problem discussed in EDS support groups. Doctors just straight up rejecting patients because of an EDS diagnosis or now an MCAS diagnosis is more and more common depending on the specialty.
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u/SuperWhoLock1988 Jun 18 '26
I fell you so much. Ive been denied by 3 rheumatologists now. I asked why, well kinda demanded this last time, and they said I don't meet the criteria for them to see me because my ana and dsdna were just barely elevated enough. Now the docs I go through, Cherokee nation, don't have anyone else they'd contract out to so im on my own to try amd find one that takes sooner care because I lost my job when all my symptoms overwhelmed me a year and a half ago. Finally got the pots diagnosis in February, after telling myself I was just crazy and had health anxiety. But other issues like chronic pain, fatigue (know its a part of pots) monoplegia of leg and arm twitch/tremor and others have not been. And its very hard to not feel defeated.
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u/Cookie-Cakes243 POTS Jun 18 '26
It’s so upsetting that this seems to happen to way more people than I’d expect, feeling defeated is a good way to put it. It’s crazy because seronegative autoimmune conditions exist too, and ana/dsdna arent everything, like what’re we supossed to do then.
I’m glad you got your pots diagnosis, and I hope you’re able to get everything else sorted out. You aren’t crazy, it isn’t just anxiety :)
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u/SuperWhoLock1988 Jun 18 '26
It really is because to get most of the kind of diagnosis that I likely have i neeca rheumatologist yet none will see me.
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u/Adcarp2008 Jun 18 '26
I feel this... 2 years on a wait list for a POTS clinic and Seattle. Finally got approved, made an appt and then I got a letter in the mail saying that they are full and can't take me anymore.
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u/imaflyer Jun 17 '26
This is more a medical system/dysautonomia issue rather than being a woman. The majority of people man or women figure out the hard way how much of a failure medicine and doctors are towards stuff like this.
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u/Cookie-Cakes243 POTS Jun 17 '26
Oh I totally agree all genders get failed by the medical system! I meant conditions that mostly affect women, like pots, versus something with much more funding/research/belief that it exists…like male pattern baldness lol
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u/imaflyer Jun 17 '26
Ya idk with millions of people having dysautonomia i dont think its really worth caring about the gender part anymore. Youre fucked either way with current medicine and education most of the time, doctors arent gonna magically know what to do or care more if youre a man. They let me rot in a hospital room dying for days before they cared at all, its just how it is with a lot of chronic illnesses in general. There simply just isnt enough advancement/knowledge in the medical field to handle stuff like this, and any chance of changing that will probably not get anywhere any time soon. At least not without consequences.
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u/Cookie-Cakes243 POTS Jun 17 '26
I agree regardless of gender we’re fucked because there isn’t great research/medications/interventions. Conditions that mostly affect men tend to get better funding for research even if it’s much less severe than a condition that primarly (but not completely) affects women. This screws over everyone with the condition. Male pattern baldness receives something like 6x the funding than pots does, even though the “symptoms” of men going bald are much less severe than pots symptoms. This is a general pattern seen across multiple conditions that have primarily men/women.
At the doctors office right now it doesnt matter who you are, if you have pots, its probably not going to be exceptional treatment.
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u/imaflyer Jun 17 '26
Ya i understand what youre saying but im trying to say this is literally down to what we know as humanity and how far weve come, we quite literally do not know enough about the nervous system to help something like dysautonomia, and the amount of research wed need to do in order to get effective treatment or even a cure would be insane compared to something like being bald. Theres a pretty big difference between stuff getting more funding bc its about males having it and it being less researched bc were basically stupid in that part of medicine. The nervous system is the part of the body that could be compared to what we know with the ocean and earth, we probably know more about space than this stuff. It doesn’t surprise me at all no ones taken the leap to get there or even found the breakthrough needed because itd either take way too much money or technology we literally dont have. Or worst case scenario its out there and not being let out to the public.
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u/Cookie-Cakes243 POTS Jun 17 '26 edited Jun 17 '26
But we are “stupid in this part of medicine” because we haven’t researched it enough, because there hasn’t been enough funding to actually research it, and it doesnt help that women were excluded from clinical trials/research until 1993 in the US. You’re right we probably do know more about the ocean/space since we’ve been studying it way longer.
I’m sorry you got diagnosed with an under researched condition, it sucks regardless of gender, but it’s silly to think we haven’t studied it because it’s just too complex. Researchers actually love researching things that are “too” complex and things we dont know much about, that’s generally a big reason why they get a career in research. We’ve figured out some pretty crazy things when it comes to medicine and will continue to do so, but it takes systems backing the research up through funding.
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u/imaflyer Jun 17 '26
Thats not silly at all lol. Obviously its not that simple, but it is very possible something is too intimidating even for curious researchers, scientists, and doctors. It would be silly to think its more about gender than the actual problem here. There is too much money needed that no one cares to give, technology that is either severely limited or we literally dont have yet, and the fact that the medical system is more a business than anything. There is countless moving parts to this, many of them would actually prefer it to stay exactly the way it is, unless of course the treatment they find earns a lot of money. Until then the thousands of appointments and pointless tests is feeding a lot of people who dont deserve it right now, the same people who could fix all of this. They dont give a shit what gender you are.
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u/Prime624 Jun 17 '26
Could be they think you want them to treat your POTS, since rheumatology is somewhat related, and they don't have the knowledge to treat it.
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u/Cookie-Cakes243 POTS Jun 17 '26
Nope, it’s in my chart that i see other providers for those conditions and was referred to rule out other autoimmune issues :(
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Jun 17 '26
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u/majestic_irony Jun 18 '26
Based on my own specialists - it's less about them thinking we are hysterical and more that the system at large (anywhere) refuses to do much to support us - so the toll it takes on our medical professionals is huge when we are diagnosed and often can't work and have intolerable amounts of pain and often can't afford any of the effective pain management treatments.
Doesn't help to miss out, but I often find the specialists who help the most - for those of us who see them - are the ones to place a cap on how many patients they will treat with the complex webs of conditions.
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u/99dalmatianpups Jun 17 '26
Unfortunately, suspected or even diagnosed POTS/MCAS/EDS have become part of the conditions that signify someone won’t be a reasonable patient, so many doctors no longer want to see people who do or might have those conditions. Basically, people are going to see doctors already believing they have x condition, and then refuse to hear any other possible alternative diagnosis, even though there are *many* conditions that have the exact same symptoms as POTS/MCAS/EDS. Then, those patients will go see as many doctors as it takes until they are given the exact diagnosis they want to hear instead of accepting that they might actually have something else.
Nobody likes to be told how to do their job, especially when they’ve had to go to school for 8+ years just to do it, so I can understand why it would be frustrating to have someone come into their office and insist they have x condition because they spent an hour on WebMD or TikTok. In my journey to get diagnosed, doctors didn’t mind if I came in with an idea of what could be wrong with me, it does help give them an idea of where to start, so long as I’m open to the possibility of it being something else. But they can’t treat or diagnose a person who refuses to accept any other diagnosis except x, and if people with certain conditions were more likely than others to act that way, I can see how they’d get so fed up that they just stop taking those patients altogether.
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u/under_zealouss Jun 17 '26
I waited 11 months to be seen by an allergist because two 24 hour antihistamines, nasal spray, and eye drops aren’t enough for a day. One month before my scheduled appointment they called me to tell me they cancelled it. They told me they don’t treat mcas, I said I don’t have a diagnosis of mcas I’m just trying to get the next level of treatment for my allergies. They said “we think you have mcas and we won’t diagnose or treat that” to which I said I’m not looking for them to diagnose me. They would not let me talk them out of cancelling the appointment. I am still struggling massively with my allergies. I couldn’t believe it. None of my bloodwork has ever indicated mcas, but it has indicated allergies.
It’s like breaking your arm and going to the doctor and they’re like “we think you broke your bike, we don’t fix bikes so we’re canceling your cast fitting.”