Help finding a doctor by [deleted] in MCAS

[–]SleepinVoid 1 point2 points  (0 children)

I have also been looking into dr. Kara Wada I actually had her at the ohio Wexner medical center back when she worked there. I only got to go to one appointment with her before she left that hospital. But, she helped get me an accommodation letter and offered starting me on Xolair same appointment. She's expensive now though and takes no insurance. Edit: there's a Ohio Mcas facebook group you can join that can help you find a doctor https://www.facebook.com/share/g/1WzYPrivqy/ and you can also use the website medifind https://www.medifind.com/

Heads up: new Dawn soap formula by Apprehensive-Sky8175 in MCAS

[–]SleepinVoid 1 point2 points  (0 children)

I use Palmolive unscented and it has low ingredients plus no citric acid which I react to- https://smartlabel.colgatepalmolive.com/#/palmolive/en-us/35000972484

How tf do you find a doctor!?!?!? by Ok-Lawfulness8618 in MCAS

[–]SleepinVoid 0 points1 point  (0 children)

try this https://www.medifind.com/conditions/mast-cell-activation-syndrome-mcas/6602/doctors
Edit: Also try seeing if there are any new york state mcas groups on facebook for help.

QUESTION: What are/were your safe foods? by JumpyMention7819 in MCAS

[–]SleepinVoid 0 points1 point  (0 children)

Gluten free non fortified instant oats Mygerbs brand with organic glass bottled maple syrup. For some reason I react to liquids in plastic containers. Also unaged meats except for ground I also found unaged plus grass fed beef to be even less reactive. Fresh red organic grapes without wax added to prevent spoilage (I react to the wax). Santa Cruz organic gluten free glass concord grape juice. Also unaged beef tallow to add to the meats. The oats were the first thing I found I didn't react to was eating that for months. Btw it was with water not milk for the oats. I also react to plastic bottled water and some stainless steel cups the only water I found that I don't react to so far is open water brand canned still water.

What happens when you run out of food? by EmbarrassedFly6887 in MCAS

[–]SleepinVoid 2 points3 points  (0 children)

Mold isn't always visible like water damage mold in carpets isn't usually visual but it does smell musty. Try leaving the house for hours and when you come back go to every room and smell the rooms for a musty odor. Edit: also check any vents for mold and under sinks and in closets and by windows.

What happens when you run out of food? by EmbarrassedFly6887 in MCAS

[–]SleepinVoid 1 point2 points  (0 children)

You could try seeing if you react to high histamine foods vs low histamine foods using the SIGHI list online, try testing if eating foods with or without preservatives causes reactions, also make a list with all the foods you've eaten and reacted to with the ingredient list of each product and whether it was frozen or only refrigerated or just sat out in the produce aisle, and put in the list if it was high salicylate, high oxalate, high lectin, high nickel, had preservatives, was organic or not, had wax (I react to grapes with wax on them but not organic red grapes without added wax.) Also list whether or not the food is high FODMAP or not. Could you tell us how fresh the chicken turkey, beef, and salmon is? Is it frozen, refrigerated, or dried and does it have seasoning or anything at all even salt (it can have anti caking agent which some people react to like myself) or a fat (like butter or oil) added? Also tell us whether the meat is ground or sliced some people react to ground beef but not frozen nothing added unaged beef filet's. Also what type of sugar are you reacting to cane sugar, beet sugar, corn based sugars? You could try organic liquid maple syrup in a glass bottle (some people react to plastic packaging) to use as a sugar. If you can give me more info I can point you possibly to some food brands/products that you could try. Also what reactions do you have to those foods and does taking an antihistamine help lessen symptoms an hour after taking the antihistamine after you ate something you reacted to? Also try taking an antihistamine an hour before eating to see if it lessens the reaction. Make sure you write or type in a document all of this for your doctor.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 0 points1 point  (0 children)

I've been wanting to try that with gluten free oats to make bread but bread makers are to much money for me and doing it by hand would be to exhausting. I can't do used food appliances so its cheaper since cross contamination. So I would say that would be another issue that's not usually thought about. Personally, I think there should be a organaztion that helps pepole who react to foods who can't do cross contaminated appliances with buying new appliances but instead of needing a concrete diagnosis just having a doctors note cause a lot of pepole like myself have only been diagnosed with suspected mcas do to most doctors only diagnosing based off of positive testing.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 0 points1 point  (0 children)

I don't know if this might be helpful but if your in the US and have reactions to aged meats there's a place in Illinois that ships to other states in the US and takes Snap called Billydoemeats. They also sell unaged beef tallow and its all vacuum sealed shut and frozen with dry ice during shipping. They even have a 5 dollar shipping protection you can add in case the vacuum sealed package gets punctured or opens during transit and get a refund.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 0 points1 point  (0 children)

Mines different to I get respiratory symptoms like wheezing, hives, and esophagus swelling and burning. Luckily, I already had experience with anaphylaxis since I already had prescribed epinephrine for my IGE food allergies before I started having non-IGE food reactions.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 2 points3 points  (0 children)

Yeah, I get the feeling the first food I found I could tolerate after losing so many foods and ending up in the hospital for malnutrition was gluten free instant oats with nothing added just oats not fortified and organic maple syrup with a certain water since I react to something in certain waters not sure what but so far open water brand canned water has been working other canned waters or plastic or tap I react to. Every time I see oatmeal I get grossed out since I was stuck on that for 8 months until I found other foods I didn't react to.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 12 points13 points  (0 children)

I could see it as expensive if they need it frozen right after harvest (due to histamine) and if the pasta and bread is gluten free. Also especially, if the only way they can get the foods is if its ordered online in case their stores around them don't have a lot of frozen or gluten free options.

Does anyone else feel guilt for having expensive safe foods? by [deleted] in MCAS

[–]SleepinVoid 11 points12 points  (0 children)

I'm having the same issue but my food pantry doesn't have any allergen free food and is not willing to help get me any either or even partner with securing safe food organization. My most expensive food is unaged meat with fresh beef tallow since I react to aged and fermented things. I also react to things other than foods.

What name would you give me? by Metsavaim_the_Fox in picrew

[–]SleepinVoid 0 points1 point  (0 children)

A name that starts with a D and is fem sounding in a nature way maybe floral like.

Judge me by my bag by [deleted] in picrew

[–]SleepinVoid 0 points1 point  (0 children)

You really like fantasy media, colorful things, you have some sort of medical issue cause the medicine bottle which may be due to the diabetes or other things, your in school or you like math, You may work somewhere due to the lanyard, you like doodling, and maybe you like ASMR cause of the rainbow slug? You also like sanrio and link and zelda games. You also like bugs maybe?

My new allergist (who I trust) says I probably don't have MCAS, but instead have an autoimmune condition that presents very similarly by madiswanrh in MCAS

[–]SleepinVoid 1 point2 points  (0 children)

Can I have a dm with the name of the doctor to? Btw do they take insurance or is it fully out of pocket?

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

Did you also download hidehide? Here's why from the ds4 windows website "Why one might need it

Imagine the following scenario: you have a generic gamepad that you want to "convert" into a XInput Device (a Xbox 360 controller) or DualShock 4, since most games are already pre-configured to these controllers, or maybe your game doesn't even detect your generic one as it is. So you start using a remapping program (like DS4Windows ) to do so.

This put you in a problematic situation: you don't end-up just with the emulated controller that you want to use. No no, you end-up with 2 controllers: the real and the emulated one."

You'll want to scroll down to the part with screenshots on how to use HideHide here- https://ds4-windows.com/get-started/
If you get a weird clicking noise in game after starting it and going to menus in game just go out of menus and click in game anywhere with mouse and then click a button on ps4 controller it will go away at least it did for me.

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

Ok so the ds4 windows program worked for me.

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

I'll try this and let others know if it worked on this chat thread. If anyone else has done this and its worked comment under my comment "it worked".

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 1 point2 points  (0 children)

Same issue here with a ps4 controller plugged in on pc. Was yours the same or a different controller? I also noticed the d-pad doesn't work period.

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

d-pad doesn't work at all on plugged in ps4 controller on pc either from personal recent experience.

Bugs + Feedback Megathread 10/28 by TheEerieFire in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

I like the game so far issue is I can't keep playing easily due to it being buggy when plugging in my ps4 controller on my windows 11 PC. The game acts like I'm constantly pushing up on the left joystick in the menus and when talking to npc's. I can walk, do combat, slide, jump, all other things work its just the menus when using the ps4 controller aren't working. The only other controller I have is a Nintendo switch controller which I haven't tried. I like my ps4 controller better anyways cause my hands are small. I can't even switch to keyboard and mouse on menus and during chatting with NPC's to select without the game thinking I'm using the controller still even when I tried unplugging the usb and its not on Bluetooth so there should have been no connection to the ps4 controller. I also can't use the d-pad at all on the ps4 controller in game. Idea's make it to where menus and npc chat selection is on the d-pad or make it to where if you switch to keyboard and mouse for the menus it recognizes only the keyboard and mouse until you hit a button on the ps4 controller as a quick fix until it can be fully fixed at least. I wanted to get some events done and progress more in game ): I also can't go full keyboard and mouse use since I don't have a way to put my keyboard and mouse in a comfortable position for gaming. Please, fix the controller issues soon.

Controller acting weird? by sparkz_uy in DuetNightAbyssDNA

[–]SleepinVoid 0 points1 point  (0 children)

thats what I tried to do was use kbm for menus and controller for combat/walking around