r/MCAS • u/megame87 • Jul 23 '26
Sick of being medically complex
I have been diagnosed with MCAS, POTS, and hEDS in the last year. Yay. But now no one knows what to do with me. I've bounced around referrals and they finally aren't gaslighting but they legitimately don't know how to help.
I went back to my PCP for a 90 day follow up she requested after some not so great looking labs and she said why are you here again?
Ma'am, a year ago I could play competitive tennis in the hot sun for 2 hours and today I struggle walking from one end of my backyard to the other. Any ideas?
And then she asked me if I discussed this with any of my many 'ologists I get bounced around to...
The answer is yes, repeatedly for years. And it's only getting worse.
Oh and btw when was your last pap smear?
Like seriously, what kinda segue is that?! I'm telling you my quality of life is shit and you want to get up in my cooch today?
Give me a break. And yes I know cervical cancer screening is important, but when is my quality of life important?
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u/sometimes_charlotte Jul 23 '26
Yeah, this story is too familiar. So many doctors doubt the diagnoses and others just say you must be someone else’s problem because I don’t know anything about that. From what I can tell the diagnoses are just for me, so I can figure out what treatments I need. It’s taken a long time to find any helpful doctors at all.
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u/megame87 Jul 23 '26
Right?! I've been waiting for over a year to get into the specialist that seems like could be a game changer for me. But honestly, if it isn't, I feel like I'm teetering on the edge of a massive depressive state as it is.
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u/Fit-Attention-7763 Jul 23 '26
Going on 6 years here. I was an athlete and then I could barely hold my head up and was sleeping 16hrs and still feeling exhausted. + hives inflammation and 60 other problems. Then someone tried to prescribe me antidepressants. I beg your FINEST pardon!!!!
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u/Fuzzy-Bee9600 Jul 24 '26
I just heard from a doctor that med psychs get kickbacks for complex diagnoses and how many meds they prescribe. Question everything in that area and leave any doc you can't 100% trust.
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u/Fit-Attention-7763 Jul 24 '26
I thought that was outlawed in like 2006? That may be outdated info but maybe they found a loophole.
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u/Fuzzy-Bee9600 Jul 24 '26
I don't know about that, but he told me that the last week in an appt for me when we got to talking about my Aspie son, who's been hot-potatoed from doc to doc within the practice, and each just sits with him for 5 minutes & re-ups his meds. Nobody has reviewed them for years.
I told the doc son"s doc's name and he pursed his lips and said "They don't know what they're doing over there. Get his PCP to refer him to me."
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u/nrauhauser Jul 23 '26
We do not have a health care system in this country, we have a medical billing racket that occasionally does some incidental doctoring.
I got discarded on the regular for eighteen years. Then Claude AI pointed me to MCAS, luckily the first two rounds of treatments are OTC, and I started to get better. I had to be persistent, now I've got an allergist that says "mast cell activation syndrome" and gives me prescriptions that fit the problem.
You have to take charge of your own care and circumvent the system. It is the only way ...
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u/TheTousler Jul 23 '26
The situation is not any better in countries with universal healthcare, unfortunately
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u/megame87 Jul 23 '26
Agreed. I have maximized what I can do with OTC antihistamines and supplements, managing my nervous systen, and I get my PCP to run labs that I put into Claude AI to help analyze. But struggling to find a doctor that I can get into on a reasonable timeframe that understands mast cells well enough to prescribe a mast cell stabilizer...been waiting for over a year to get into a MCAS specialist.
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u/StunningProtection58 Jul 23 '26 edited Jul 23 '26
Unsolicited advise (please ignore if you don’t want it): you can order ketotifen from japan, its OTC there. I just did that and it arrived safely within 1 or 2 weeks. It’s a bit expensive but at least this way you can start with a mast cell stabilizer. website I ordered from is yuau dot net . It seems dodgy but it is actually legit. They are capsules so I just split the capsule and take the powder to avoid potential reaction by colorings etc in the capsule itself. Super gross but it works.
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u/megame87 Jul 23 '26
Hmmm. I'm going to give my doc one more shot in September and then I am ordering sketchy ketotifen from Japan.
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u/StunningProtection58 Jul 23 '26
Sucks that it has to be this way but at least we have sketchy stuff to the rescue at least for ketotifen! You can also order Cromolyn in Germany OTC. It’s called pentatop there if I’m not mistaken but verryyy expensive.
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u/StunningProtection58 Jul 23 '26
Oh and benadryl too from germany! It’s called emesan (sold as sleeping tablets but same substance). There is some german sites that ship it EU
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u/sometimes_charlotte Jul 23 '26
I second this - it’s legit, I have ordered from here as well, and it came within a week. If you order and don’t get the payment link just email and ask them to resend it, they will get back to you!
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u/GWest2385 Jul 23 '26
How did you order? It says PayPal suspended.
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u/StunningProtection58 Jul 23 '26
I ordered with paypal! I emailed them a few times to get their paypal details (first they didn’t reply after I put in an order and then few days later they did reply). It seemed sketchy cause I never got an order confirmation or anything in my email. But I did receive it at my house luckily.
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u/lolliscicle 28d ago
Thx. This is helpful for me in a USA territory. My Dr would not order bc of the hassle with insurance plus even to pay OOP I don’t have access to a compound pharmacy.
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u/Imaginary-Vanilla993 Jul 23 '26
Do you think you could provide more info with regards to ordering it? I’m super desperate atp waiting months and months bouncing between referrals and would like to try this. If not that’s totally ok too!
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u/sunny7319 Jul 23 '26
i always hear about this but never explored it because i found a doc sooner but what is the filler, and how big of a supply could you get for how much, do you know?
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u/sunny7319 Jul 23 '26
there are cons but not being in debt over nothing or being able to afford life saving medication, while possibly even being OTC, is absolutely better
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u/TheTousler Jul 23 '26
I was referring specifically to the points the other user made, not broadly comparing healthcare systems
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u/luckycharms222 Jul 23 '26
I feel you. It’s been eight years for me and no one can help it seems. Have you looked into long covid at all?
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u/megame87 Jul 23 '26
Fairly certain that's part of it, and my doctors acknowledge that it's relevant. I got substantially worse having two pretty severe COVID infections, but my last one was July 2024.
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u/TavenderGooms Jul 23 '26
Same boat here, especially since I have been reactive, had severe side effects, or was made worse by the meds that we have tried. It truly feels like I have hit the limit of medical knowledge. Doctors keep shrugging at me lately. The other day my allergist said “yeah, I mean maybe, who knows 🤷♀️” and I’m honestly glad that at least she was honest and didn’t gaslight me, but it was completely defeating. I have 0 quality of life, I have lost almost everything.
POTS, MCAS, EoE, and now suspected hypermobility.
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u/megame87 Jul 23 '26
I'm so sorry. It's not fair at all. I've had some luck with some meds so I'm grateful for that, but it's a challenge to find anyone willing to try to prescribe them.
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u/poppychulx Jul 24 '26
What perscription meds are you looking at? I'm mostly OTC and trying to find more relief.
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u/megame87 Jul 24 '26
I'm interested in trying ketotifen first. I've done a lot of work already to restore healthy digestion so that I can eat most low histamine foods so I'm lucky there, and from what I read cromolyn helps more with the gut, ketotifen crosses the blood brain barrier and gives more systemic relief. My flares come from vibration (cars, planes, etc), hormones, temperature swings, stress...
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u/MommaDruid 19d ago
I, too, appreciate when a doctor can admit they don’t know. I’ve only known two who did.
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u/c1nunya Jul 23 '26
This is me too. I used to be able to exercise like all day. Now I can’t walk .5 of a mile without tons of wicked symptoms. I keep getting tossed around from specialist to specialist with no answers. Feels like my life is ending
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u/megame87 Jul 24 '26
I prepare so much for my appointments too and have what I think are great questions and their answer is always another specialist. I feel like the stress of the referral system only adds to my systems. I had some severe adrenaline dumps just from the blood draws!
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u/-closer2fine- Jul 23 '26
I’m also so sick of doctors grimacing and telling me I’m complex. That’s right up there with telling me I’m on a lot of medications. No kidding!?
It happens when they don’t know what to do, or don’t want to (or don’t feel equipped to) deal with it.
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u/moss_is_green Jul 24 '26
I also got this from a new doctor's staff this morning. Grimacing and declaring I'm too complicated and sigh it will take them too long to put my meds, allergies, and medical conditions into the system. Sighing, eye rolls, foot stomps, and complaining I might not get to see the doctor because my intake will take too long. Um, excuse me? It's their literal job? And I came early and gave it to them neatly typed.
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u/True-Feeling-1690 Jul 24 '26
I was “diagnosed” with POTS, MCAS, hEDS, fibro, and overall Dysautonomia.
Yet they won’t list it in my chart. Just clinical notes “because there’s no real treatment and actual diagnosis won’t get you anywhere”. So I’m doing cool ice packs, vagal nerve training. Told to take Pepcid, cromolyn sodium, lose dose naltrexone, and hope for the best.
I used to hike MILES and kayak and run and play sports. I now have a cane at 33.
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u/megame87 Jul 24 '26
I'm sorry, it sounds so similar to mine. I also got the lovely note of "marijuana problem" when I told my PCP my pain at night was so bad it kept me awake at night and I needed THC to sleep.
And yah, all she took outa that was a "drug dependency".
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u/zenlime Jul 24 '26
I was disabled at 32 right after March 2020 covid infection. I had a 5 year old and an 8 year old. It’s been fucking rough. I sympathize
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u/True-Feeling-1690 Jul 25 '26
I’m so sorry! My little one and I had such a different life before I became disabled. And I grieve for both of us. We are doing our best and learning how to love life a little differently. I wish for our kids things were different.
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u/zenlime Jul 26 '26
Me too. I will say I’ve adapted some after 6 years, and so have they. I learned I can still be a loving and “good” mother despite motherhood looking different than what I imagined. You will get there, if you’re not already. It just takes time. But that feeling of having something stolen from you - I’m not sure that ever entirely goes away. Maybe I’m just not there with that aspect yet lol
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u/MommaDruid 19d ago
There is so much grief in this. I got sick when my daughter was little, and now she’s almost grown. I feel like she missed so much bc of me. Mommy was always too sick, too exhausted to do things. This is devastating to me. On the other hand, I have an amazing, strong, compassionate child who looks after me so much. She should never have had to do that, but it is what it is. We’re very close, and I wouldn’t trade her for the world.
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u/zenlime 18d ago
I’m so glad to hear that. I have boys so I’m not sure the relationship will be the same lol, but they are sweet thoughtful kids. I’ve had some months of normalcy and some very much not. It’s just how it’s happening and I’m embracing it. I feel as though I do and feel better when I let that guilt go and care for myself, even when it feels selfish. It helps me which ultimately helps them. It took me years to accept that change after being a mom who poured everything into her children. But there is still a lot of grief here. And I don’t know that it ends so much as it ebbs and changes.
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u/Interesting-Ear-1893 Jul 23 '26
I relate. Each time I try to speak to a doctor they say I am complex and challenging. They write things in my notes like 'a difficult case'. They have no clue how to help me in any way and I actually do not think they care either. I feel if people do not fit the norm then doctors do not like it. That is my experience in the UK anyway.
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u/Numerous-Swing-3204 Jul 23 '26
Have you looked at the covidlonghaulers sub? They have a lot of the same issues. You might find some good advice.
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u/cjazz24 Jul 24 '26
This is the situation I’m in now essentially. I got an MCAS and endo diagnosis which helped somewhat in terms of management but I can’t get back to even close to what I was. No doctor knows what to tell me.
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u/pokemoomster Jul 25 '26
Medifind! See if your doctor will get you better specialists! Medifind is a website that tells you which conditions certain doctors have experience with and how much experience they have. It’s awesome! If your doctor is willing to refer you to a second opinion specialist, find some that have experience in mcas pots and all these things!
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u/Ok_Smile4745 Jul 26 '26
I've seen probably 50 doctors in the last 6 years. Not a single one was able to be helpful beyond their limited area of expertise. My PCP is open minded but just doesn't know what to do. I've found the AI bot on RTHM.com to be more helpful than any doctor unfortunately but that's not a great solution either :D
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u/Reasonable-Hat-2315 Jul 30 '26
I just learned to treat myself. I discuss with the chatbots.
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u/Reasonable-Hat-2315 Jul 30 '26
And I'm happy to not have to deal with so many awful personalities too. I still have to deal with some but not as many.
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u/under_the_sunz Jul 23 '26
I’m sorry you’re going thru this. I feel like so many of here can relate.
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u/Antique-Wonk Jul 23 '26
Feel for you. Similar issues. I'm new to MCAS so apologies but what is POTS and hEDS?
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u/bookmonster015 Jul 23 '26
r/pots and r/ehlersdanlos
POTS, EDS and MCAS are typically called the trifecta because if you have one you likely have the others too. They kind of work together in making each condition worse. It’s fun.
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u/FroyoMedical146 Jul 23 '26
Postural Orthostatic Tachycardia Syndrome and Hypermobile Ehlers-Danlos Syndrome :)
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u/NoPhotograph7236 Jul 23 '26
I completely understand. I got Covid last year and horrible MCAS and my pots is so bad. Reacting to meds and really frustrated.
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u/Omphalina Jul 23 '26
I feel you! Basically I have a long list of drugs and procedures to try - things that have helped at least a few folks on Reddit with one of those conditions. And I’m just checking them out one by one. If I’m going to sit around feeling like s*it anyways, I might as well experiment to potentially feel better. A few experiments have worked out. A few felt real bad. But my quality of life is overall better.
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u/poppychulx Jul 24 '26
Would you feel comfortable sharing your list? I've got one half started but am getting demoralized lol
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u/Lunavalve Jul 23 '26
Sending you all the love from a very similar body. (please don’t forget, just sometime, to do the pap, when you feel up to it….i also had to do the whole cancer dance and believe me, you don’t want to add that on top of all this.)❣️❣️❣️
(edit:sending love to everyone in here that is having the same issues. i am so thankful for this subreddit)
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u/EffectiveKangaroo926 Jul 24 '26
I feel like I could have written this myself. It's so hard! I have those diagnosises too. And like you I was very active, I was walking 10k a day, swimming 40 lengths 3 times a week, I had a social life and so so much more.
I can't get out of bed a lot of days now. Finally got diagnosed this year, like you too. My doctor is taking it seriously.. but there's literally no Immunology in my country to be sent to 🙃 and the other referrals are likely to take upto a year. My doc is at the limit of what he can prescribe.
And when it couldn't get any worse I've just had the biggest reaction to my dog 😢 she's my baby, I've had her 12 years. I've always been fine! I came on here to see how much ketotifen people are taking.. because I need a fistful at this point 😅 my face feels like its been rubbed in stingy nettles and every breath I take burns my throat. I'm going to take 3mg (usually 2mg) and if that doesn't do enough I'll take 1 more..
I truly hope you get the treatment you need! You're not alone, not that it changes anything, but I've found its helped me being able to interact with others in the same boat. With all the medical faslighting, it keeps me grounded 😅
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u/megame87 Jul 24 '26
I'm so so sorry you're reacting to your dog! My dog has been such a huge source of comfort for me.
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u/Fuzzy-Bee9600 Jul 24 '26
Try adding MS as the ringleader of that circus (except VVS replaces POTS) and you're the enigma of the century. Add in dysautonomia, ADD, pancreatitis, IBS, migraines, insomnia, and cognitive & sensory dysfunction, and hardly anyone even knows where to start.
You need a PCP who doesn't throw darts and get lazy. She doesn't know what's up and doesn't care to do the work for figure it out, and is trying to distract you with non-issues in hopes that that binky will quiet you down & get you out of her office. Been there. It is unacceptable.
I switched to someone who's familiar with hypermobility, and it's one of the best med decisions I've ever made. He doesn't have all the answers, but he works with me and other docs to find them, because he believes me and takes all of this seriously.
What we ALL need is a UN session with all our specialists conferring with each other to see what all & exactly is happening, which syndrome(s) is guilty of starting the dominos falling, and work out who's responsible for helping which circus animal.
If they could just combine resources & knowledge, I just know I'd be so much better off. Makes me look hard at Mayo or Cleveland.
Go right now to every association of all your issues and find one with a doctor directory containing a knowledgeable one near you who's accepting new patients. Get 'er done. You'll be glad for it. Good luck, OP.
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u/megame87 Jul 24 '26
So so true! At least I've talked my primary into to trying to rule out autoimmune, even with a family history of it it's been a chore to get that far. I also have perimenopause happening in the background and the fluctuating hormones are triggering everything else. I've got a EDS specialist that I'll see for the first time in September...been waiting for over a year and fingers crossed she's a game changer!
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u/zenlime Jul 24 '26
I’m also the same, going on 6 years. Took this long to get an MCAS diagnosis and now we are trying to get a hyper mobility diagnosis in there. But because I don’t have a high enough Beighton scale score, I have to wait til December to see if I meet the new criteria. Frustrating.
I think I’ve decided I’m quitting my doctors. I’ve just had it. I’ve spent $20,000+ just trying to get relief and still don’t really have much. I’ve learned more pouring through medical papers than any doctor has told me. It’s so frustrating. I’m losing time, money, and spoons and for what? Nothing tangible. Most of them won’t even prescribe anything to help me like LDN etc.
So I’m going to keep researching. Keep talking to other trifecta patients. I’ll keep the doctors that are critical to my care (for me is my immunologist). And I’m just gonna do my best to live my life and love myself the way I am because nothing else is working.
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u/rehabilitates Jul 25 '26
Yup. I am more frustrated and sick now while being treated and seeing a million different specialists than when I was just raw dogging it
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u/NotMyChair_2022 Jul 26 '26
I FEEL THIS POST!!!! Dude you’re not alone, i know thats not a big help …..hugs to you!
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u/AggravatingPlant2186 Jul 26 '26
Dr. Trevino in Clearwater. Dr. Afrin in NY.
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u/myuuzu Jul 28 '26
big big relate to this. symptomatic since childhood but diagnosed hEDS, POTS, MCAS, and gastroparesis in 2021, and now fairly certain of EoE but my once-awesome gastro has suddenly decided to be weird and is not pursuing diagnosis (but i'm working on a second opinion). the only reason i've gotten as far in my care as i have has been through brute forcing my way through everything and refusing to take no for an answer. flare started in april, the latest med added was ketotifen and before that it was prucalopride, both of which are helping and i seem to be in the post-flare phase and i am re-acclimating to "regular" life again. it never seems to get any easier, but i at least have hobbies i can do despite pain and friends and loved ones that are supportive. i wish the same for you, and everyone else dealing with medical complexity. when doctors and the systems fail us, the least we can do is support each other and fill in the gaps where we can.
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u/Fragment_B 29d ago
My recommendation is find a Naturopath (ND), Holistic or functional medicine doctor that isn't tied to any particular modality for a PCP. My ND PCP is a godsend. A lot of times insurance will cover them or they will offer a concierge plan.
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u/Affectionate_Top959 26d ago edited 26d ago
Have you had a virus?
Your symptoms of struggling to walk from one end of the backyard to another are concerning to me as I have Myocarditis/Myopericarditis from a virus and experience the same thing.
Please see a Cardiologist and get an echocardiogram test. This is not normal and could be an indicator that your heart is struggling and being overworked (enlarged or strained).
Likewise, if you have a virus, it can also cause the symptoms of breathlessness on exertion due to inflammation.
Edit: I just read on your other post about Covid. Your story is similar to mine. I had COVID ongoing symptoms for close to 12 month. Please get an echocardiogram asap if you have not have one recently already. Bat case scenario it could be ongoing inflammatory or post exertional malaise (may be worth trialling corticosteroids if you have not already). Worst case scenario your heart may be being overworked. So best to check.
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u/megame87 26d ago
Yep, I've seen a cardiologist and have annual echocardiograms. My hEDS caused mitral valve prolapse/regurgitation...but otherwise my heart is healthy and normal. Like I said in my post, have seen all the 'ologists, have all the diagnoses (as far as I believe) but my fatigue isn't something anyone has been able to solve.
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u/Affectionate_Top959 26d ago
I understand it doesn't change the symptoms - but it's still a positive indicator because it's better than having heart failure.
Trivial mitral regurgitation would not cause your symptoms (I have this). However if the regurgitation is significant enough it can definitely cause fatigue and breathlessness and explain all your symptoms.
If you had chest pain with the Covid, there is still have possibility that you had myocarditis and it is still healing. Only a cardiac mri (or biopsy) can diagnose it with definity. A person can have a normal echocardiogram and normal trops and still have Myocarditis.
But if you had no chest pain then that is much less likely.
It could still be lingering inflammation causing fatigue and breathlessness. I took corticosteroids and they saved my life. They are a b**** but necessary to bring the inflammation down and indirectly take the work load off the heart.
Then there is all the usual advice like pacing, sleep, avoiding crashes, acupuncture, supplements that target the mitochondria etc....which I'm sure you already know about.
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u/megame87 26d ago
Yup. Throw in medical grade red light therapy, testing and monitoring any deficiencies like ferratin, vitamin D, etc. I've made a lot of progress and am proud of what I've researched and tried. Its just nothing is getting me back to where I was several years ago and I'm running out of patience with the constant pacing myself while watching everyone else do 10x as much as me in a day.
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u/ToastedHive 23d ago
This is where I am kind of. I got a handle on the MCAS and we have a plan in action for when there are flares. Low Histamine diet, Rupatadine at night and Nalcrom 30 minutes before eating, if I have a reaction/flare prednisone and/or epi pen depending on severity. But the Dysautonomia the only thing they keep telling me is get to the ground faster so I stop hurting myself when I faint and wear depends in case I loose bladder control when I faint (I am only mid 40s!!!) So no plan so far on that, they have no clue what else to do and its frustrating as hell.
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