I also have Hashimotos and MCAS. It took 10 ER trips and 1 hospital stay for me to get a referral to allergy. I am a doctor in psychology so when they started with the panic attacks, hypochondriac crap I would slam them down and point out as the only Dr. in the room trained to treat those illnesses this isn't even close to my illness. I still got jerked around but it only took me 3 months for diagnosis and not years as some folks. I recently started on xolair and this has been life changing. Best wishes to you. I am in the US and feel like in the 6 years since my diagnosis, MDs here are slightly more aware of this horrific illness.
Would you believe my allergist who diagnosed me with MCAS still thinks my symptoms are from anxiety and wants me to see a therapist? I don’t deny this illness is anxiety-producing, but if we could focus on helping me feel better, that seems like the best “therapy.”
@Lady Die I was diagnosed with sleep apnea in 2008 and use my CPAP machine every night. I still have days when I’m very sleepy though. I haven’t experienced anything like narcolepsy. I can always choose when I take a nap and when I push through the fatigue.
@Lady Die I don’t do any adjustments to my CPAP. I’m a nurse, so I’m careful about things like that. 😊 How do I use my computer to access additional data from my machine?
It would definitely take someone with your credentials to overcome the gaslighting and abusive behavior from MDs. They refuse to perform the required due diligence, and I wish we could sue them as they cause harm by not diagnosing and treating, or delaying same, plus adding stigmatizing, victim-blaming lies to medical records that then further doom us. They are so arrogant, and so *extremely* ignorant (and misogynistic). The way they treat people says much about them, and nothing about us causes their abhorrent behavior. Pubmed is free.
@@maryannemckay3606 yes decades then have to work out the illness for ourselves mcas is linked to hypomobility Asperger's add fir which I have them all Charles Darwin did to
There are conscientious and helpful GPs out there. I just wish there were more! (And that they got the pay, conditions and thinking space to foster this attitude.)
It’s always a very frustrating journey for most sufferers of this rare disorder. I was lucky enough to find a Integrated Doctor who attended seminars regularly and was well educated on these Autoimmune diseases. It’s a really tough condition to have, and everyday is a battle, and every symptom is so random. I too got treated as a hypochondriac by many specialists and I cannot tell you the money I spent trying to find answers. Needless to say, my mental health has declined considerably.
I have mcas and I do understand what you ve been through because that s also my story.. So many times doctors told me " it s all in your head".. It s so frustrating .. I m French and doctors were hopeless.. So I went to Germany to see an mcas specialist and I did the 24h urine test to find out the methyl histamine.. It turned out that although on a histamine free diet, I was way above the upper norm.. Also I had an angio oedema.. My lips eye lids cheeks were so swollen and red.. That was impressive.. Then back to France with my results and pictures of my face, I started to appear as an mcas patient.. I did a bone marrow but there wasn t enough bone marrow so the lab couldn t use it and tell me if it was a mastosistosis or if the c kit gene had mutated.. Bottom line I have lots of inflammation throughout my body and excruciating pain.. I use anti histamine h1 h2 and anti leucotrienes /montelukast and Mast. Cell stabilizers.. Strong smells can trigger a flare, pollens, stress, medicines... You name it.. And just like you, I have auto immune hashimoto s... I was an painter.. Now I m a full time patient.!
@Lady Die i either have diarrhea Or constipation with cramping and severe bloating .. my stomach also swells sometimes after meals ! But as weird symptoms I d say bone pain ! Nothing to do with joints ‘ pain but that hurts ! Plus all the other symptoms linked to the disease ! Flares are unpredictable ! Unless of course I eat histamine or Tyramine high food …dairies Gluten ….then I know I m gonna be in trouble !
@@RuktietI had a major attack after eating rotisserie chicken. I think the darker colored meat close to the bone can accumulate histamine. It started with really nasty intestinal cramps and a prolonged time on the toilet because the cramps wouldn’t stop even after my colon is empty. Then I got that “thawing” sensation of itchy pins and needles in my palms and soles of my feet. It feels a bit like edema from being out in the cold then suddenly “thawing”. Then came the vomiting and extreme dizziness, fainting, unable to stand. I didn’t have my phone with me or I would have called 911. I tried to crawl out of the bathroom but when I reached up to turn the doorknob I completely fainted and smacked my head on the door. From now on if I run to the bathroom with stomach cramps I take my phone with me so I can call for help. Not even being able to walk or open doors without passing out is something terrifying.
I’m sorry that you have to go through that. But I wonder: did you suffer from excessive bloating after food prior to this development? Did you have food poisoning before this? Do you have any chronic infections? Were you very stressed prior to this? Did COVID perhaps trigger this?@@marshallsweatherhiking1820
Wow. So sorry for all the trouble you had. I too have a wonderful open minded doctor, who is helping me with long covid. No answers yet as my symptoms just amped up a couple days ago, i thought they'd subside. Glad you are sharing your story, i hope others see it and help out. Be well.
my story is very very similar, it’s been a little over a year, i worked though it for the first about 6 months and it got much worse/nobody knew what was happening. as of a couple months ago i ran into mcas and ever since treating it as such (quercetin, antihistamines, magnesium, etc) im seeing a lot of improvement for the first time. im seeing my doctor next week and talk to him about the stabilizers. im praying this is it.
@@jawhnie “Candida” has been the scapegoat of naturopaths back when knowledge of the GI microbiomes was even more limited than it is today. I HIGHLY urge you, if you haven’t had one already, to get a lactulose breath test taken, preferrably with Trio Smart if you live in the US, to check for SIBO (Small Intestinal Bacterial Overgrowth). Research at Cedars Sinai university hospital (in the MAST group led by Mark Pimentel) has shown a mechanism in which food poisoning leads to a whole cascade of effects which lead to a reduction in the capacity of the small intestine to clean itself out leading to overgrowth of colonic species disrupting the small intestinal microbiome leading to IBS(-D) type symptoms, with diarrhea correlating with presence and quantity of bacterial species producing hydrogen sulfide. The same team has also found a different type of condition in which methane producing micro-organisms overgrow and cause constipation (IMO; Intestinal Methanogen Overgrowth). They also found a whole bunch of epigenetic changes and immunomodulatory effects due to the SIBO. This might be the root cause of the overactivity of your humoral immune system, including mast cells. There is also a condition in which Candida, or, more generally, fungi overgrow in the small intestine. This is called SIFO, but it’s much more rare than SIBO. There can also be colonic dysbiosis, which can be unreliably checked via stool microbiome analysis (stool tests can NOT detect SIBO; the small intestinal microbiome differs extremely from the colonic and stool microbiome). But given that the small intestine is much more sensitive and immunomodulatory (because it’s where you absorb all your nutrients and thus has great permeability) than the large intestine, and given that this post-infectious SIBO mechanism is very common, I highly suspect that you have this, unless of course that you have already tested for this and turned out to be negative. In any case, please take a lactulose breath test if you haven’t already, and don’t blame “Candida” for just about anything before ruling out SIBO. Good luck!!
Yesterday, I went to a follow up appointment with the hematologist oncologist, only to be rushed out in less than 5 minutes. Felt more like I was on an assembly line than being a patient. This is NOT medical care!
Wow. Sounds like a terrifying experience so I'm glad you've come out the other side. I'm a MCAS sufferer due to I'm told mold exposure. Would you mind sharing the medication you took?
Yes. I've had recurring problems for years only to be inferred as hypochondriac and wasting doctors time. It's only because I became so ill after having COVID that I've been diagnosed as having MCAS by the long COVID clinic. I'm still struggling as I was diagnosed 2 months ago but only picking up medications today .
My Mom has Hashimoto’s (I do sometimes wonder if I have a latent case but my thyroid hormone always comes back normal) and this is like my life story, complete with the random issues when I was younger and I am a painter. Then I got Covid in July 2020 and started having the “panic attacks” that were not panic attacks, then I started having random lip, throat, and tongue swells daily and had all the tests including the bone marrow biopsy, then my doctor said it was probably MCAS and prescribed me cromolyn, Monteleukast, h1 and h2 blockers. My insurance denied Xolair. Now my swells are down to just occasional flares. My immunologist said the Covid probably flared up already existing mast cell/autoimmune issues. The “panic attacks” turned out to be supraventricular tachycardia caused by mast cell flares.
I hope this young lady is still doing well. I suffer and have had all those tests too. I’ve seen so many damn specialists it’s beyond nerve racking!! 🤬 My severe symptoms of not being able to breath, chest tightens, windpipe narrows, I cough violently until my back feels broken! Coughing up tons of mucus all day. I haven’t slept in the bedroom with my husband for over 2 friggin years now. I am so thin, I look like I’m at deaths door. I am getting a referral to a Mast Cell specialist in Boston. They will be inundated with all my medical records from the past 3 or more years. I can barely function anymore. This has seriously crippled and debilitated my life. Filed for SSDI but we know that will take forever to even get word about it and they’ll probably end up denying it anyway. Bastards! 🤬
Getting a diagnosis for this is so hard. Its a big problem if acute anaphlactoid reactions are rare. I only experienced two, but both were absolutely horrible. It felt like I was dying, like if I had collapsed from exhaustion after running a marathon but couldn’t recover. I couldn’t stand up or even sit upright without passing out. Yet it happens so fast that I’m better 2 hours later. Like am I supposed to purposely trigger one of these events just to give a blood sample showing elevated tryptase? That would be ridiculous. The problem is other than these two events I just have debilitating low grade symptoms like headaches, dizziness, and sudden weird mood changes for no reason (Occasionally I will suddenly feel extremely depressed or extremely tired after a meal). I have been diagnosed with eczema, but its not really severe or constant. Rashes will just flare up randomly for a few days then fade. My worst symptoms are chronic tiredness and depression which I believe are mast cell related because unlike typical psychological illness they vary a ton throughout the day and seem to be triggered by meals. Also, the depressed feeling is accompanied by a weird physical sensation like pressure behind my eyes, light headedness, and nausea. I ruled out celiac and specific food allergies.
@@revelation1215 I don’t think so. These events started with sudden intestinal cramps and diarrhea, then itchy feelings on the palms of my hands and soles of my feet. I would describe the itching as the “thawing” sensation when you run your hands under very warm water after coming in from the cold. Its associated with a slight swelling of the fingers. The dizziness and weakness came 15 minutes later. I just started feeling more and more ill each minute. I was also sweating like crazy and my heart was beating really fast. It got really bad after I vomited because it was hard to catch my breath. It was after I vomited that I felt something very wrong, like my body wasn’t getting enough oxygen. It wasn’t like my airway was physically constricted, but I just felt this horrible feeling like I was going to die. I’m almost 100% sure it was the feeling of very low blood pressure. I passed out when I crawled to the bathroom door and reached up to turn the knob. When I eventually got to my bed and took all my sweat soaked clothes off I noticed my skin was a weird brownish red. The worst was over, but I started itching all over until I took 75 mg benadryl. That’s what finally gave me relief. Also, I have had other times I had bad cramps and diarrhea. Taking 50 mg benadryl stopped it from getting worse. For a while I was taking benadryl every time I felt those cramps coming on and it always stopped it. The only problem is I will be too tired to do anything for a few hours. I hope this gives a better picture of what happened. I had absolutely no idea what was happening and was about to call 911. If I had my phone with me I would have, but I left my phone downstairs when I ran to the bathroom.
I know someone who suffered for years with similar "we don't know" and "we think it is this" from doctors. She persisted and was finally diagnosed with Mastocytosis. I think it is related to MCAS, but I do not know much about either condition.
Gosh, this is been happening to me for the last 12 months. It’s gaslighting. My Dr is treating me for MCAS despite what the hospital and specialist said. I also have blood clots from the Covid vax
How do you know the blood clots are from the vaccine and not Covid itself? Covid kicked off my MCAS. And I know it wasn’t the vaccine because it was invented yet because I got Covid in July 2020.
Omg the gaslighting is so real from general drs … I basically diagnosed myself and told the dr I need an epi pen that my breathing had gotten worse. He said no that I need to get skin prick test first!!!!! I was furious. If I die from anaphylactic shock then this Dr is also dead.
Im really suffering with this right now. The drs are no help. I don't ont know what im going to do. I feel like I'm playing russian roulette with the anaphylaxis reactions. My throat was open my mm with the last one. If my throat closes completely ill die. I'm on my own 99.9% of the time because my husband works away. The ambulances don't get to you for hours and it peaks within about 20/30 minutes. I'm either going to die infront of my kids or I'll be ok within an hour or so albeit drained and sleeping 😔
Keep medrol at hand, take medrol and 10 mins later aerius if you have an attack. Carry also an epi pen with you. Avoid histamine rich food and histamine activating food. Avoid cosmetics especially do not use hair dye. Use vaseline and water for your skin care.
Never under any circumstances let a doctor tell you that you're having a panic attack when you know you are sick , you shut them down straight away , MCA's isn't even rare it's like 1 in 10,000 to 20,000 on the planet
What's the point of getting doctors to diagnose when all they do then is give you meds to manage the disease, when in fact it can be healed just like so many other diseases? I never got the diagnosis, but have had MCAS since doctors had nearly killed me as a toddler. And yes, I've also gotten the "it's all in your head". I even did 25 therapy sessions that didn't do anything useful. The only thing then that helped was that I got a time out from everything. I'm done with doctors and am currently in the process of healing myself. It's working. There's so much scientific evidence on what works, yet doctors only play pharma shills as usual. Hard pass! That's how I got this in the first place.
