u/Usagi_Rose_Universe

My Drs can't agree if some of my symptoms are MALS, MCAS, dysautonomia, or gastroperisis, but treatment isn't the same both long term and in the short term. For example, I'm not going to want to use epinephrine if it's not anaphylaxis. It's to the point even specific scenarios my Drs can't agree on what they think caused it.

A few weeks ago I had an incident where after just a few bites of oatmeal, I felt it get stuck in the upper left of my stomach, my nausea got worse, and the back of my throat started to feel tight but I could still swallow water, medication, and saliva. My tongue started to feel funky and I was having difficulty breathing, upper body felt like it was losing circulation, and then I started shaking although the shaking might have been anxiety at that point. After about a half an hour of it not improving I was told to call paramedics. They didn't know any of my health issues, told me I was above their pay grade (I understand my health is complex but they said it in a rude tone of voice and they said other stuff that showed poor understanding of being a wheelchair user too and such because they expected me to be able to walk without assistance.) My oxygen was 100%, and my pulse and BP were fantastic so I decided to stay home and hope I would be ok. I have to be very careful with hospitals with my MCAS (I react to most meds and I get anaphlaxis from at least some medical facilities despite wearing a respirator in public) , Myalgic Encephalomyelitis, severe emetophobia, and I'm immune compromised.

Problem is, my Drs can't agree what that was or similar incidents. Most of my Drs don't know what MALS is and are just hearing about it from me. I'm not officially diagnosed but just highly suspected to have it by a GI Dr and my nutritionist, and some others think it sounds like I have it. A different Dr thinks it's gastroperisis though but he also doesn't seem to know much about MALS and I'm aware MALS is often mistaken as other things. So although one of my Drs said that whole incident sounds like anaphlaxis and that she would have had me use epi, she is not educated on MALS, gastroperisis, and she knows dysautonomia exists but nothing really about it including basic stuff such as compression socks. Some others think the food getting stuck set off other symptoms.

Ever since I stopped having the oatmeal, I only have ice cream cones and oatly vanilla oatmilk left, and I'm currently in a long process of trialing oyster crackers to see if I can do yeast and baking soda because historically bread and crackers helped my stomach, but I have to re find out of my MCAS can tolerate it. I'm having a heavy diet of liquids and since then my energy has significantly improved, stuff doesn't get stuck as much in my stomach outside of my period unless I drink too much too fast, my breathing has improved and sometimes I can take a deep breath without pain now which I recently found out in the last few weeks that taking a full deep breath isn't supposed to hurt apparently????? I'm getting more calories too, although it's still not enough and idk how to. Only thing is my family asks sometimes multiple times a day when I'm going back to oatmeal, and the ice cream cones I'm eating have been out of stock at the store for a week now. I did buy a food processor for the oats to see if that changes anything but I've been admittedly scared.

I'm trying to find compression socks small enough for my feet. I'm a kids 1 or women's US 3.5. I'm hoping for ones that aren't scratchy or fall apart easily. I have cheap compression socks from Amazon that are kids but after 1-2 washes they are falling apart and after 2 months are stretched out too much. They don't put enough compression on my toes either.

Extra note, if there's any dance socks with compression in that size that you find helpful for POTS, I'm open to that.

The Ehlers Danlos society has been posting about their conference and I think I saw a single surgical mask and that's it, plus they had cheerleaders that supposedly don't have Ehlers Danlos on stage. (Please correct me if I'm wrong about that but some people are trying to claim that some of the cheerleaders are hypermobile but that's not the same as Ehlers Danlos.) I remember seeing some dysautonomia org every year too that has little to no masks in sight. I'm not even sure what to support anymore. I want to raise awareness for organisations and such that actually help people and not hurt.

Covid made my Ehlers Danlos bad enough that I used to have issues opening my front door because my elbow would sublux. I'm very fortunate I have a personal trainer who has helped me but not everyone has that access or capability. Covid specifically goes after my pelvic floor dysfunction too and I had to drop out of online uni several years ago because I was in so much pain sometimes my vision would go black and I developed migraines too. I had to quit martial arts too and I haven't been able to make it through a ballet barre at home in my own time even since then. I could only work once a week but my issues kept getting worse so I had to quit early 2023, not to mention this couple who would donate to my place of work wanted me fired for wearing a mask which stressed me out. In 2023 I had to become mostly housebound for my safety because covid made my MCAS a lot worse and I was getting anaphlaxis at least once a day and my BP would sometimes get deathly high and my pulse would sometimes get deathly low. I still have drs questioning how I am still here through all of that. The list goes on with things, plus other viruses (and a medication recently that was promised to change my life for the better, and stuff like an extra mouldy room I used to live in) have made my health worse too, especially ME, MCAS, and gastroparesis and/or MALS. (Idk if I have MALS but I'm suspected). I know most of y'all here probably already know this stuff happens but ugh.

Have any of you had GERD and gastroparesis or MALS (I'm not diagnosed with MALS but need to test for it somehow) symptoms that mimic an MCAS reaction? I felt like I was having throat tightness, difficult breathing, funny tongue feeling, lightheaded, etc but prior to that I was also struggling to digest food. I called paramedics but my oxygen was 100%, pulse fine, BP fine. I'm trying to get a nurse to come out to me with my home health but idk if they will come or not. They wanted me to contact my GP Monday or go to urgent care but I'm mostly bedridden due to my MCAS and ME/CFS, and her anaphylaxis to a lot of cleaning products so I have to avoid most medical facilities if possible aside from some that are no scent allowed like my GP.

Anyways, now my throat burns and I have all this acid reflux and head pain. My tongue still feels funny but idk if it's just from all the acid because despite zofran, my acid is intense. I've had to go off of prilosec about a month and a half due to me starting to react to it so it's been rough, and my dysautonomia has been worse because I've had to drastically change my diet in may because my MCAS got suddenly very severe which made everything else worse. My breathing now is mostly normal and I can swallow my saliva at least. I'm scared to eat again once I'm more stable though and idk what to do. It's the weekend so I won't be able to hear from any of my MCAS drs and good luck hearing from my GI Dr even during the week. I *was* eating a combo of all of the safe foods I have left plus water when I started going downhill. It's so weird. I feel ick but I'm elite to hum a bit rn (helps my anxiety).

Paramedics would have taken me to be safe but I was worried about risking anaphylaxis from environmental reactions in the hospital, I'm immune compromised, severe emetophobia, and my wife and mother are both not doing well so they wouldn't be able to come with me so I would be scared. I also react to benadryl, albuterol inhaler, cromolyn, H2 blockers, amitriptyline, apparently prilosec now, and who knows what else medications. I've never even used my epi pen or neffy yet because idk what will happen. I also didn't feel great because the paramedics were kindof cold, told me I won't react to the hospital because I'll just be in a hospital bed so I can't react in there, was told there's meds to fix it, and that Stanford hospital knows what to do for this. I can't say for Stanford, but in a local online group I'm in, there's others with MCAS who have said hospitals in the area have no idea what the heck to do even when it is for certain anaphlaxis so they just go to get emergency meds, maybe oxygen, and go back home. 🥲 I was supposed to get a nebuliser finally yesterday, but my nurse put the order in wrong and put it with albuterol which ironically gives me difficulty breathing.

Edit: Of course I'm painfully starving now since I barely ate dinner due to everything, but I don't even feel safe to eat while my entire family are all asleep.

How do you go about adding food back in? My MCAS got suddenly very severe a few months ago and I stayed getting anaphlaxis to a ton of my safe foods so eventually I cut down to three foods I was tolerating and took a break from trying to add foods back in to give myself a break physically and mentally. Three foods aren't enough for me though and I really need to gain weight. My current foods are oatmilk, oats, and ice cream cones. The oats are pretty heavy on my stomach though and because I no longer tolerate prilosec, it's been rough. My life right now just feels like eating, digesting, drinking liquids, and taking medication.

Different medical pros are saying different things to me but none of them have advice on how to actually go about how to add things back or try things. I was told the nutritionist would walk me through it, but she also has only told me what foods to add, but didn't have suggestions how to go about it. They all just tell me what food they want me to try and none of them can agree. Between all my medical pros and family members telling me when they think I should add foods in and what foods, it gets quite overwhelming, and some people it's hard to explain it's not just "fear of reaction", but I cannot afford to loose weight from a reaction and my body cannot go through another severe reaction because I have yet to recover from the anaphylaxis I had two months ago. I also keep getting told I'm the most severe patient they have seen, and I've been told by some drs that I'm too severe for them to know how to help so that's fun. Also my mother was saying if you cut food out too long your body forgets how to tolerate it. Is that true?

Currently since that big anaphylaxis, the furthest I've gotten was swallowing a piece of bread and a piece of cracker, but it's hard to tell if I reacted or not because with the bread my stomach felt unwell but I had also started my period so who knows. (I regret cutting the bread but I used to take it with my prilosec so I thought it was bread I was reacting to but turns out I was absolutely reacting to my prilosec. The bread used to help my stomach a ton, but I cut it out in May🥲) The cracker was weird because I was fine swallowing a small piece one day but a few days later just licking the cracker was enough for me to get suddenly nauseated, my body tried to pass out, etc, so idk if it was even from the cracker or just a coincidence. I also have weird issues if I over exert and get PEM too bad with my ME/cfs, I start to have issues eating or drinking anything, food might start feel like my tongue is burning, and struggle to even breathe and swallow outside of eating or drinking so that's an extra layer of issues.

Are there any non medication routes that can be used to help MCAS in addition to medications? My MCAS has been so out of control ever since I tried cromolyn in April, and prior to that I've reacted to so many different medications in my life since I was a toddler. Since trying cromolyn, I've lost meds I used to be on, and I'm currently only eating 3 foods, but I'm unsure if I'm reacting to one now or what's going on. Are there any other methods to help MCAS that aren't just medications that aren't people who are out here trying to claim you can cure cancer with your brain? 😅 That's where I'm kindof stuck because most of my drs rn only want Western medications and that's it. That's all they know, and they often can't even answer my questions on those that I have, especially what I'm dealing with currently. I've also run into someone who all they cared about was my autism and wanted to "cure" me and claimed that was the cause of all my health issues, so I need some sort of a balance.

**Extra info:** I also have dysautonomia, ME/cfs, GERD (I produce too much acid confirmed with endoscopy), suspected gastroparesis or MALS but I've never been tested for MALS because of my MCAS 🫠, Ehlers Danlos, spina bifida, post viral illness both covid and non covid, and there might be other things in unaware of because my immune system when checked years ago is compromised in multiple ways, and theses some other stuff like dwarfism that's never been tested. Also, after starting even after stopping cromolyn, I started to react to bug bites. Some of those bites, I immediately started getting anaphlaxis to more foods from. I'm unsure if they are gnats or mosquitos that were getting me. I'm in the SF bay area CA if that helps at all.

My bedroom at my parent's house has had mold since 2023, but my wife and I couldn't get anyone to believe us until late march/April 2025. They only are believing it about the hall closet as of yesterday. My father did some petri dish thing to test for mould that can take a few days but with day 1, ones of my widows and the hall closet were showing mould already. Now on day two my bedroom closet is showing some, but so far my furniture including my bed are not yet. According to my mother the one window is actually overflowing the petri dish with mould now on day two.

The current plan is to replace both windows especially because the one that is extra mouldy, my grandfather said was installed incorrectly about 28ish years ago. My father just wanted it sanded but my mother already scheduled people to come out to look at the windows. My other window isn't so bad but it will get replaced too. My mother, wife, and I all want the carpet taken out and just have wood but my father in the past said "absolutely not". The carpet is 28 years old, could be mouldy, and even if it isn't, it's been through a lot. The hall and bedroom closet, my father just wants to wipe it and put "mould killing and sealing paint" in there but idk if I'll react to that kind of paint, and my wife already has issues with normal paint that can set her asthma off for much longer. I'm also unsure if paint is really the right way to go. Does that even work? My mother is suspicious about the paint too and said she wants to go about this the right way because she wants my health to come first, and basically all of the bedding in the hall closet is so musty smelling, my wife and I haven't been able to use it in the last two years because we immediately react and my mother stores her sheets elsewhere because it's so strong. My wife and I will buy a new mattress when the time comes and we already bought new sheets that are staying at my grandparent's house rn.

Side note, my wife and I have been staying at my grandparent's since March because the mould in our room got so out of hand and we were sick which made our health worse too so my wife couldn't go in our bedroom without having an asthma attack. The only tricky thing is my grandparent's have a slight mould issue too, but nowhere near as bad. It's mostly their washing machine and a cupboard so we are washing anything that's not hand wash in my parent's machine. 🫠

Do any of you/have any of you had luck with forearm crutches that fit you? I'm 4ft 7 and my bone structure with my arms are tiny so I'm worried about buying something that is too big. I asked an Ehlers Danlos support group but unfortunately no one had any suggestions for someone my size aside from getting a kids, but the kids ones I've found so far are for people shorter than me.

Have any of you had success with finding a hairstylist that is willing to come to your home and help with your hair? I'm in the SF bay area CA and have been trying to look up options but I'm struggling to find anything that is what I'm looking for. My hair is a knotted mess that needs help being detangled. My wife and I have been working on detangling it for about a month but I can never finish the job so it gets tangled up again. Aside from the very ends of my hair that I tolerate fine, the rest of my hair hasn't been washed in two months and one small section at the top hasn't been washed in even longer for several reasons including that ever since I got sick in February, getting the very top of my head wet causes my body to try to pass out, I get extremely nauseated, can't do much after it happens, etc. I also had severe anaphylaxis a month ago so I'm stuck in bed even more than I was prior because I have yet to recover and I'm not getting proper medical care. I'm pretty much just left to suffer while I keep begging drs for help. And my MCAS being worse makes my ME worse.

Normally I wear a bonnet to sleep or some sort of protective style, but silly me was so out of it I couldn't even remember where I had put my bonnet and wasn't thinking about my hair the first week of the anaphlaxis tbh. I don't even have too much memory from the first two weeks after it happened. I've had more movement in my sleep I think too.

When asking my local coviding group and doing my own research, all of the options want recently washed clean hair and only are for haircuts, hair styling for events, and some offer colour, and for some reason the options are only for men and women that you have to select which you are but I'm neither of those genders. 😬 I may need a trim (which I might be able to do that part myself tbh. I have been for a decade) but my hair absolutely needs to be detangled before it can get to that point.

*Please no suggestions for me to shave my hair or to cut a bunch off.*

I've been trying to decide for years if it makes any sense for me to pursue genetic testing or not for dwarfism. I'm 4ft 7, my mother is 4ft 6. Have any of you gotten anything out of getting tested in terms of treating/getting help for chronic health issues? I have a lot of physical health issues so I'm unsure if that could potentially help. I always have some anxiety bringing up wanting to be tested for things from my GP even though my current GP is literally amazing, due to past experiences with drs. I feel silly asking to be referred for so many things but I do really have a ton of health issues. My mother isn't as bad as I am (I'm currently mostly bedridden and in the process of re learning how to walk) but she has a lot of health issues too.

My Dr had me try the oral liquid cromolyn on my skin in April and I reacted to it all 3 times I tried it. The third time though I had to wash it off immediately because not only did I have sudden need to use the restroom and a weird unfamiliar feeling in my stomach which I got the other two times, but I also had sudden throat tightness and difficulty swallowing. I stopped using it after that and my MCAS specialist's nurses also told me to stop immediately.

About a week-week and a half after the last time I used the cromolyn, I suddenly had significant worsening of my MCAS. I started reacting to foods I had just tolerated and it increasingly got worse to the point I got temporary inability to swallow along with other symptoms from just a bite of zucchini that used to be one of my main staples and I was struggling with swallowing for over a week after that with any food. Then I started reacting to several other previous staples. The most recent awful one was almost a month ago now to chicken which used to be one of the things I would go to when I was at my worst. I had such awful anaphylaxis worse than I ever have had to the point I've been in the process of re learning to walk and I've lost a ton of weight from that which I did not have room to loose. I lost 2 lbs within the first few hours of the reaction!

I've been trying to figure out what's going on and how to go forward with this because my MCAS specialist and my allergist/immunologist I see haven't offered any info on this and have been no help about the cromolyn. It was a comment I saw under someone else's post on here that made me wonder if the cromolyn could be part of the cause of my sudden worsened health. My personal trainer/nutritional coach who is helping me the most out of anyone and is very knowledgeable about MCAS, Ehlers Danlos, etc, also brought this up during my last appointment because she came to the same conclusion as I did. I just talked to someone at a compounding pharmacy about this and said it's possible it could have sent me into a flare but they don't think it could have made me as bad as I am if I only used it topically, but that after discussing other medication reactions I've had and such, they said I also am more sensitive to meds even compared to a lot of others with MCAS that they compound meds for.

I have other reasons why I've gotten worse because I did get worse prior to this which is why I tried the cromolyn in the first place, but I want *this* bad. I have other things possibly making me worse rn too but my personal trainer/nutritional coach and I are thinking it could be several things going on and we are trying to figure that out to see what to do moving forwards since my actual drs are less interested in seeing what's going on and instead are just throwing tons of meds at me. I understand meds can help and I am on some meds but from past experience I have also had things that have made my MCAS worse, found the cause, fixed it, and got better.

I am diagnosed with MCAS, dysautonomia, and a whole bunch of other things but one of my Drs is convinced it's not actually MCAS. My 24 hour urine test she said only had methylhystamine out of range at 202 which she says isn't quite high enough to be MCAS and she said everything else being in range means it's not enough. I was on Claritin twice a day at that point, eating not fully low histamine but lower and had been lower for a decade at that point, and my labs were mishandled but she's saying that wouldn't change the results of my test. (When I took it in 2023 she sure said it would mess with the results if it wasn't put in the fridge on time). My other Dr for MCAS had the opposite reaction. She was shocked how out of range my methylhystamine was and assumed I was not on Claritin and eating "normally" and was worried at the results and was even more concerned when I told her what actually happened.

I'm struggling because I know I made a post just recently but basically my health got worse very suddenly and all my Drs are telling me it's MCAS mostly and even the GI department just sent me away saying it's MCAS and that they can't help and so did my GP. The allergist/immunologist who says it's dysautonomia thinks that's the cause of my reactions. The things causing the reactions everyone aside from her thinks it's MCAS is stuff like food, environmental reactions such as people smoking, certain scents like perfume, certain essential oils, certain types of mold, lots of cleaning products, scented plug ins, etc, and other things such as medication and some fillers, skincare products, even a lot of pads for my period I can't use, etc.

The symptoms I experience from reactions include: hives, redness, itchy skin, itchy eyes, blurry vision, brain fog that can get so intense I may temporarily forget how to speak English or long term forget part of my second language if it's really bad, too low or too high blood pressure, extremely low or slightly elevated pulse, feeling like someone is smashing my head, numbness, tingling, sense of doom, increased nausea, increased acid reflux, temporary loss of hearing but not fully, shaking, ears turning red and hot, temporary inability or difficulty swallowing, throat tightness, temporary inability or difficulty breathing, inside ear intense itchiness, head pain or migraine, and I'm probably forgetting something.

I know that I have dysautonomia but my Dr is now convinced that me suddenly having way more food reactions out of the blue is entirely dysautonomia including what everyone else is calling anaphlaxis that happened to me with chicken twice a few weeks ago bad enough paramedics had to come out. There's only sometimes where I question if something is MCAS, dysautonomia, or something else unknown because I'll get random things that feel like how my mother used to say her hot flashes feel???

My MCAS specialist last week told me to go on nasalcrom despite me getting throat tightness/difficulty swallowing with a few drops of liquid cromolyn just on my skin and I've been told by several other medical pros not to use cromolyn including both of that dr's nurses. I'm being told to do a week of steroids and my concerns with Ehlers Danlos and steroids were totally brushed off and I was basically told it's guaranteed to make me better which I don't like because she did that with benadryl in 2024 that I reacted to despite taking not even half a kid's dose out of precaution, and then when I told my Dr my reaction she was just like oh yeah that happens to some people, and changed the subject. I'm being told to go on compounded Allegra to avoid fillers but it's $300 for 30 capsules and I've gotten zero response on what to do about that. The compounding Pharmacy was also scared for me and almost didn't want to fill it because they said the dosage was too high for my size and once I told them I'm also on claritin 3 times a day they were even more concerned and my Dr apparently had to call and convince them a second time that it's fine. And I'm being told to go on ketotefin. Earlier this year or last year before I got worse I was also told to try quercitin. That's too many meds being thrown on me at once. My MCAS specialist also told me I need to see a different GI Dr so I have an appointment in June, and she told me I need to see a regular allergist so I have an appointment in two weeks with someone I used to see until 2023 that I got back in with. She wanted me to see a nutritionist too until she found out I've been working with a personal trainer/nutritional coach twice a week since April 2023 who specialises in Ehlers Danlos and all that. *When I say my Dr, I mean there is some guy who was relaying all this info to me over the phone during almost an hour phone call where the Dr was apparently typing her responses back and forth to this guy who was also trying to give his input here and there.*

I'm unsure where to start. All I know is whatever I do, I'm starting small even if that means opening a capsule or something like that and seeing if my skin can handle touching it. *The compounding pharmacy said they can leave the capsules unlocked for me so I can open them easier.* It's scary because in the last 2 weeks I've suddenly declined and within the last week I've declined so much I'm scared and my whole family is horrified and crying.

I had the worst anaphylaxis I've ever experienced a few days ago to chicken and ended up having anaphlaxis again the next day not quite as severe literally from taking a sip of water from a bottle I had been drinking while eating the chicken. I wasn't thinking because the anaphylaxis messed with my ability to think properly. I had the paramedics come out for the second reaction but by the time I had them come, I was doing better so my vitals were all stable at the time. Unfortunately none of them knew what MCAS was. They didn't even recognise the neffy I had next to me that I said was epinephrine when they asked if I had any on me and it says epinephrine on the box. I didn't end up using it because I got scared what if I react to that too because I've never used epinephrine before but I don't feel safe knowing that the paramedics don't know much about MCAS. They were very nice to me and I'm thankful for that but I'm definitely worried.

**Tw: mention of unwanted weight loss**

*Last bit is I'm so scared because I lost weight after a family member got me sick over two months ago. I couldn't keep any weight I gained. The day before the really bad anaphylaxis I got up to 79 lbs (I'm 4ft7). Then I had the bad anaphylaxis to the chicken and ended up getting down to 77 lbs after being I think 3 or 4 hours into the anaphylaxis. My stomach is so incredibly sensitive now and I'm reacting to so much that as of today I'm now 75 lbs. I'm horrified and I'm so incredibly weak. I've been a lower weight in the past due to MCAS, GERD, and either gastroparesis or MALS, and I used to have borderline hyperthyroidism but it was a much more gradual weight loss in the past, I was eating more food, I was eating a much larger variety of foods because I could, and I was exercising a lot due to the fact I used to do figure skating and was a dancer for musical theatre but now I'm in bed almost all day because I'm so weak. Exactly a year ago I was 10 lbs heavier than now.*

Also I've posted about this before but idk exactly why I'm so much worse suddenly. I've been getting mosquito bites pretty much daily since march aside from when I was in orange county California for a week. Legit as soon as I got home my health got worse though. As in, I started to get worse as soon as we reached the bay area in the car before I even got back home yet and once I was home I ate and had a reaction to food I was tolerating before I went to southern CA. I just keep getting worse since I've been back home. The Only other thing I can think of is either a bit of a delay of post viral issues, or I totally think I have cavities that I've been begging my dentist to take x rays for since last August! AUGUST! She said it was "too soon" and to wait for January. Well I still haven't had x rays and as of last week I react to my toothpaste now. I'm asking my local Ehlers Danlos group if there's a mobile dentist because I'm too unwell to make it in the car to my usual dentist. I just feel so lost. I was literally at Disneyland two weeks ago eating a ton of food including a ton of chicken! I only had two minor reactions to food there and I only had two incidents of my body trying to pass out, one of which was totally my fault in the car on the way there.

I'm wondering if there's any apps y'all use to help with anxiety even if it's not necessarily a therapy app like something that is cozy gaming, puzzles, card games, etc to keep my mind occupied. I have games I enjoy on the switch and computer but I don't always have access to using those.

I've been trying to stay calm because my MCAS has been totally out of control, I'm on my period, my body keeps feeling like I could pass out, and my stomach is doing really awful. I've been struggling with eating and I'm working with my Drs on this but I have a severe case of MCAS that recently got very severe. I took zofran, chewing gum, took a hot bath with a cool towel on my head/neck, and I've been smelling bergamot and peppermint essential oil, but I'm still feeling unwell and I'm just exhausted but unable to lay down let alone sleep.

If there's any other methods y'all have for anxiety please let me know. I did ask my therapist for advice on this today but she's kindof stumped on what else for me to do aside from stuff like deep breathing and relaxing games for me.

So my MCAS and ME/cfs got a lot worse after a family member got me sick in February and potentially in March too. My reactions are all over the place and pretty inconsistent. I went to Disneyland last week that I booked prior to getting sick and almost didn't go because of how bad I've been, but I was more functional and only had a couple reactions with food. I came home Saturday and I'm just getting worse and worse again. I live in California but I'm in the SF Bay area and Disneyland is about a 5-7 hours drive South of me for reference. Last night suddenly I started reacting to even more foods and today same thing. Ever since I felt throat tightness earlier with breakfast after eating a piece of zucchini which is one of my last vegetables I had, I've been struggling eating anything that isn't water. I even reacted to food last night that was literally safe a few days prior and have been and were some of the last safe foods left. I did tolerate a Rubicon vegan vanilla cupcake well this morning along with plain boudin sourdough bread. I kindof tolerated a fresh Kirkland baguette about a half an hour or so ago and Costco chicken but I couldn't eat much because I feel like my throat is still kindof tight and struggling to get a lot of food down. I did talk to the nurse of my MCAS specialist yesterday and this morning. I called again this late afternoon after I got worse because they have a line you can call about symptoms you are actively having, but they are closed now so hopefully I hear back by tomorrow edit I'm reacting it seems like to the chicken and bread now too because I'm trying to eat more and now it seems like a problem and that was all I had left that I wasn't reacting to i think. Also I have yet another mosquito bite 😭😭😭

What is not helping is as of yesterday I'm kindof on my period but also not? Idk what's going on but it's being really weird and that's not normal for me. Also, I've been living at my grandparents house since March since my health is usually a bit better here due to less mold than with my parents (and I'm pretty sure my wife and I got noro from a shared restroom with my father we both can't do that again) but I keep getting what I think is mosquito bites here. I'm ass that's not helping my MCAS. I'm assuming it's mosquitoes because my wife is killing them almost daily and occasionally they will end up in the tub with me during my bath. 🫠 I'm trying to figure out what the heck else is making my health worse in the Bay area CA Orange county. I was *more* stressed and way more anxious on my trip so it can't be that I was more relaxed. I even had a panic attack before/on one ride, was on edge the entire car ride getting to Disney, almost didn't go to an event because of my stomach and was freaking out, my wife was mentally not doing so great at one point due to trauma from something that happened on a Disney trip last year, I have severe emetophobia so being near that many people who could be experiencing motion sickness makes me anxious, etc. I'm the most calm probably at my grandparents basically with access to my own restroom. I'm worried how much suddenly worse I've gotten though.

I brought water I drink from home. I only drink crystals geyser or arrowhead sourced from Northern California spring water currently. Idk if food cooked in Bay area water is a problem or bathing in bay area water?? Type of mold? I usually do worse in heat and I did the worst when it was the hottest on my trip at 75F. The cooler and more humid outside it was on my trip the better I felt which is typical for me. Air quality was worse in southern CA but the type of pollution I swear smells worse in the Bay area. I can literally smell the difference. I can also smell the difference between bay area CA and Japan. I was even able to take my respirator off in the middle of nowhere in the Japanese countryside around a ton of sakura trees in full bloom to smell the good air. I usually wear a draeger explore 1950 n95 in public or can99 depending on my situation. At Disney in the park I wore the can99 which doesn't protect much for my MCAS and I only wore it for virus reasons. The draeger isn't perfect but I can't find a respirator that's better that fits me that my MCAS doesn't react to because my silly MCAS reacts to carbon filters?!???

Medications I've tried with MCAS over the years that I don't tolerate: Pepcid, Tagamet, topical Cromolyn, Oral Benadryl, now I react to topical Benadryl too it seems as of January, used to take Bonine to help with motion sickness but I swear it helped my MCAS but I react to that now too as of April

Medications I'm on both for MCAS and non MCAS: prilosec, zofran as needed, Claritin. Not necessarily medication but I also will drink tumeric nutmeg mixed in water for my stomach, ginger candy, and mint gum for my stomach

Medication I'm waiting to try: ketotifien. It just got called in today. Also waiting for my Dr to call in Bonine with rice as a filler to see if that does anything. My Dr wants me to try Allegra too but I need to try one thing at a time and I feel like I should prioritize the ketotifien since Allegra is in the same class as Claritin.

I react to h2 blockers, oral Benadryl, more recently to topical Benadryl now, nsaids, idk if it is a reaction per say but amitriptyline, iron/b12 supplements since getting covid in 2022, oragel (I get a lot of canker sores/mouth ulcers), and recently I seem to not be tolerating Bonine. About two ish weeks ago I tried topical cromolyn because of how bad things are to see if I could even tolerate that, but I seem to be reacting to that now too and my MCAS specialist's nurse just told me yesterday that I should probably stop trying it for now because the last time I tried it on my face, I was struggling to swallow. I had other possible reactions but that's the more concerning symptom with that.

I asked my MCAS specialist's nurse what to do since I don't have an appointment with my Dr for several months unless I can maybe get something sooner. I keep getting told to go on Allegra by the Dr but the nurse said she will get back to me on that since I'm currently on 3 Claritin a day already (used to be 2 but I increased it recently) and those are both h1 blockers. If anyone knows if doing 2 different h1 blockers if worth it please let me know because the nurse wasn't sure. I myself requested if it's possible to get ketotifien topically. I've only tried ketotifien eye drops several years ago that at least at the time I didn't react to. It just gave me major sensory overload and my Dr at the time told me it would dry my already painfully dry eyes out so I didn't continue. I'm waiting to hear back about that, and I was already my specialist's first patient to use cromolyn topically so they are trying to figure things out along with me. I was also told to take zofran but then the nurse noticed I'm already on it as needed. Unfortunately I've required more zofran since being sick recently than I took the entirety of all of last year.

I just feel so stuck because a family member got me sick in February and I'm pretty certain again in March after I had not been in public since early December literally because of how high flu, rsv, noro, and hmpv were in my area based on waste water and hospitalisations. My MCAS and me/CFS got worse. My dysautonomia temporarily got worse but that at least improved. I keep getting such random reactions to food that used to be safe and it keeps changing. For example I've reacted to the same food I tolerated about a week prior. A really weird one is this sauce I made myself so I knew exactly what was in it made me react immediately, but a half an hour later I was frustrated and ate more anyways since the reaction didn't cause breathing or swallowing issues and suddenly it was fine to eat a ton of it???? A few things are more consistent. A lot of my reactions though lately do cause difficulty or temporary inability to swallow wayyyyyyy more than I used to. Because of this along with my other GI issues that I don't think are all MCAS related, I've been unable to put any weight back on that I lost when I was sick. It's weird.

I went to Disneyland this last week that I had booked prior to getting sick, and despite really really trying to eat more, and despite being pushed in my wheelchair the majority of the time, I lost a pound when I weighed myself when I got home???? Even more confusing is that I was unable to use the restroom about 5 or 6 days (not my norm, but sitting in the car and my wheelchair for too long aggregates my pelvic floor dysfunction and I missed a day of PT because of the trip) aside from pee so idk how that's even possible and my MCAS specialist's nurse is also confused but concerned about my weight. She's going to see if I can get into a more MCAS educated GI Dr because my current GI you can't even get an appointment with him at all. Like he's booked at least until November and I can't schedule at all and when I did see him in the past he wanted me to start with 4 viles of cromolyn orally a day which my MCAS specialist said would make a parent who isn't even as severe as me have a problem. My current GI nurse can't really help me. She mostly wanted me to use a very expensive vagus nerve stimulator but I've tried something similar that my heart or dysautonomia was very angry about. She also wanted me to do stuff like go on ssri to have relief somewhere in my life if it can't be my physical health, and see a GI nutritionist that's $1,100 an appointment (it was legit half that a year ago I kid you not) to "widen my food intake" despite me already working with a nutritional coach twice a week who's also my PT since 2023 who's specialty is Ehlers Danlos, dysautonomia, MCAS, and she's even know about me/CFS.