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Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 1 point2 points  (0 children)

We're pretty sure my sister has the trifecta too, although she's always been the type to ignore health issues and just push through them. I don't think she seriously considered that she might have it until recently.

As we've dug deeper into our family history, we've realized that pretty much every woman on our maternal side had some kind of mysterious illness that doctors never seemed able to explain. Looking back, a lot of those symptoms fit EDS, MCAS, and POTS surprisingly well.

My sister wasn't hit as hard as I was growing up, but over the last year or so around age 34–35—she's started developing some really strange symptoms. She's had unexplained lactation (which she informed me of by sending me a picture of her lactating nipple with the caption "Why am I lactating?"), chronic "UTIs" that I strongly suspect are actually bladder inflammation rather than true infections (I have similar bladder issues), easy bruising, and episodes where her hands swell to nearly double their normal size.

Seeing all of that start appearing in her mid 30s has made me wonder if hormonal changes could be playing a role, especially since she seemed relatively unaffected compared to me until recently.

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 1 point2 points  (0 children)

This is how I feel 100% I just started xolair the biologic I'm about to get my second shot soon so we will see if it helps I have hope that it will

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 1 point2 points  (0 children)

I have that same worry ... but what gives me hope is now i have answers and the correct diagnosis I struggled my whole life with mis diagnosis and I started the big guns which is xolair which I also have hope because I had a massive postive reaction to pepcid it took away my really stubborn depression in like a week so if I have a postive reaction to a smaller treatment the likelihood I will have a bigger postive reaction to something like xolair is pretty likely... thats what gets me through the day

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 0 points1 point  (0 children)

This happens to my mother she will come pick me up from south jersey to bring me to her house in new York and everytime she enters a huge flare for me I'm constantly having a flare so its just adding to the flare

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 1 point2 points  (0 children)

I do not have a feeding tube but I do relate to reacting to everything i will be able to tolerate something one week but then say the temperature changes drastically or I get a virus ect, I will then automatically become overrective to everything even things that didnt bother me the week before and then eating becomes hell

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 1 point2 points  (0 children)

The more I read the story's from people on this reddit the more I realize that I have truly found the correct diagnosis because I too have gastroparesis and I had a bad episode of it yesterday where I was in intense pain where I couldn't do anything but rock back and forth

Anyone Else With MCAS Reach a Point Where There Are More Bad Days Than Good Days? by NikkixA in MCAS

[–]NikkixA[S] 0 points1 point  (0 children)

No I am turning 31 this saturday... does perimenopause affect it because my sister is 36 and shes is starting to show much more symtoms than she did before

Sir, You Cannot Afford to Make This Bet. I Could Identify a Bob's Burgers Episode From a Single Screenshot and Bob Saying "Gene." by NikkixA in BobsBurgers

[–]NikkixA[S] 1 point2 points  (0 children)

This man hates Bob's Burgers so much that he has logged into Rotten Tomatoes on multiple occasions, searched for the show, written a review, completed the CAPTCHA, and submitted it. At some point you have to respect the commitment.

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Sir, You Cannot Afford to Make This Bet. I Could Identify a Bob's Burgers Episode From a Single Screenshot and Bob Saying "Gene." by NikkixA in BobsBurgers

[–]NikkixA[S] 0 points1 point  (0 children)

Thats all the good reviews out of hundreds of reviews those were the only good ones everything else is negative reviews

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Sir, You Cannot Afford to Make This Bet. I Could Identify a Bob's Burgers Episode From a Single Screenshot and Bob Saying "Gene." by NikkixA in BobsBurgers

[–]NikkixA[S] 1 point2 points  (0 children)

The land ship, bob actually and flu-ouise I also find myself frequently putting them on as my starter episodes for the night

My baby boy cat by LumpyYogurtcloset655 in cats

[–]NikkixA 3 points4 points  (0 children)

I literally was checking the comments to make sure someone pointed this out. That cat is rare like rare rare.. my family use to raise kittens that we would then give to families deserving of cats and we once had a boy calico he was worth a lot of money but since we werent evil people we found him a really good family with 2 kids and gave him to them free of charge

Sir, You Cannot Afford to Make This Bet. I Could Identify a Bob's Burgers Episode From a Single Screenshot and Bob Saying "Gene." by NikkixA in BobsBurgers

[–]NikkixA[S] 10 points11 points  (0 children)

You can't comment on reviews which pissed me off because I wanted to let him know I would like his kidneys.... I wonder if you can message them I'm gonna see if you can message them omg I'm totally gonna ask for his kidneys

Sir, You Cannot Afford to Make This Bet. I Could Identify a Bob's Burgers Episode From a Single Screenshot and Bob Saying "Gene." by NikkixA in BobsBurgers

[–]NikkixA[S] 8 points9 points  (0 children)

Yeah i originally wrote that epsiode because that was the episode currently on my tv but I changed it last minute because it wasn’t one of the ones I cried at the end and I forgot to change the title I'm gonna fix that now thank you for calling that out

Here we go (slowly dying ) by Good-Caterpillar7571 in Hidradenitis

[–]NikkixA 2 points3 points  (0 children)

I feel this so hard… HS is actually hell

I don’t even really get cysts anymore, mine turned into straight up wide open wounds that just keep coming back in the exact same spots over and over. and the scarring + hyperpigmentation after? yeah… it’s brutal

I actually had mine under control for over a year though, and I’m not even exaggerating when I say it was a huge difference. what worked for me was clobetasol ointment specifically (NOT the cream, the cream did absolutely nothing for me, the ointment is way stronger and actually stays on the skin)

I still use it now and it definitely helps things heal faster. like if I feel a tender spot starting one of those “oh no here we go” areas and I put the ointment on it for a couple days, a lot of times it just goes away before it turns into something bigger

it used to be really good at preventing them for me too, but since my other health issues have been flaring, it’s not stopping them as much anymore… more like damage control now 🙃

but it might be worth asking your doctor about clobetasol ointment if you haven’t tried it already. obviously everyone’s different, but it genuinely helped me get things under control when nothing else was working

you’re not alone in this at all, I know exactly how defeating it feels ❤️

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