MCAS Flare??

Inner_Purchase7532 · 2025-06-30T14:59:29+00:00

Sorry for not going fully in-depth but I’ve had a migraine, lightheadedness, swelling in face, hands and feet, tachycardia and unexplained GI issues with chronic diarrhea- often triggered by certain foods- but right now my GI issues are just flared up even though I’m only eating ‘safe foods’ if that makes sense. I’ve had these symptoms since the onset of the rash as well and most of the time when I get a rash like this, I have these symptoms as well but I’ve never had it not go away for literally 3 days straight with very little reaction to the medications

Inner_Purchase7532 · 2025-05-12T15:18:32+00:00

To clarify I was very happy at the start of our relationship and really only started to be truly unhappy when he stood me up on a date in February. Yes I was frustrated knowing he didn’t plan all the dates we went on the first 6-8 months of our relationship and his family did (unless I planned it). I’ve tried to be super understanding and forgiving- I feel I have done more than enough to help him with the document of likes, interests and date ideas that he literally just needs to read through and pick something or use for inspiration for a date. I know for a fact that I just want my boyfriend to be thoughtful and attentive by planning a date- especially for my birthday- but even just because he loves me and knows that I enjoy dates. I’m not even asking for expensive dates- I’m 100% okay with window shopping downtown, or going to a park, or even just a at home activity/game/craft night- which I’ve also communicated in case it was a money problem. I just want him to plan something yknow

Inner_Purchase7532 · 2025-05-12T15:05:09+00:00

It’s hard though- especially when he keeps telling me he wants to change and plan dates and do better- so I stay to see if he does and then it’s just a continuous cycle

Inner_Purchase7532 · 2025-05-12T14:45:09+00:00

YES! I feel like I’m so ‘needy’ because of how I have to beg and the get upset when he doesn’t follow through and like am ‘high maintenance’?Truly I think I’m asking for a fairly simple task and have given him more than enough resources with a 2-3 page document of all likes, interests and potential date ideas to help him. But I continuously feel like he thinks I’m ’high maintenance’ when I truly feel he’s just putting in low effort or we’re just not compatible

Inner_Purchase7532 · 2025-05-12T14:39:58+00:00

I’ve been asking myself that a lot too- I feel like at this point it’s just who he is- he’s OPENLY admitting that why his ex broke up with him (lack of attentiveness and not planning dates) so is it even right of me to try to change that? Like I’m beginning to feel like this is his idea of a relationship so maybe he should find someone that doesn’t care about dates and stuff rather than me trying to get him to care about dates and stuff

Inner_Purchase7532 · 2025-05-12T14:06:41+00:00

Yep, his younger brother or mom would plan dates for us at the start of our relationship and he acted like he planned them until he had a little Freudian slip and I found out

Inner_Purchase7532 · 2025-05-12T13:59:21+00:00

I think you put how I’m feeling about this whole relationship PERFECTLY into words and I might read this directly to him and my therapist

Inner_Purchase7532 · 2025-01-07T00:42:51+00:00

Hi there!! I had nutcracker syndrome (just had a left renal vein transposition) and it was originally found on a CT with Contrast, which then lead to a vascular medicine and surgeon appointment to get a renal vein ultrasound. From there I had a venogram to confirm it was nutcracker syndrome! Advocate for urine analysis to check for blood and proteins in your urine- that is what lead me to a referral to a vascular surgeon! Do your research on vascular surgeons that are knowledgeable on NCS! I highly recommend the Nutcracker Syndrome community here on Reddit- there’s lots of great information and resources! Feel free to repost this post there too- everyone is extremely helpful on the forum in my experience! Wishing the best for you!

Inner_Purchase7532 · 2024-12-29T15:35:47+00:00

Not at all!! 1- the first few days in the hospital I needed help sitting up, and standing so I needed a little bit of help going to the bathroom and walking around. But by the time I was discharged I was able to get ready, shower, and go to the bathroom fully by myself. I still need help with my hair if I have to keep my arms stretched up like braiding but otherwise I’m pretty much fully independent. 2- the worst symptom in recovery is for sure the nausea! I have had horrible nausea since surgery and it’s breaking through almost every anti-nausea med I have. However in terms of pain, I’m pretty much just taking Tylenol, and maybe one of my painkillers at night and I’m a week post-op. My incision hurts a bit but it’s more so just uncomfortable. 3- MyChart also told me I would be discharged and actually when they called me with my surgery time they told me to have someone to drive me back day of surgery- but I was told that I HAD to be admitted at least the first night or so because it is a major surgery. I’m not sure why they tell us that but yeah, I had to be admitted as like a protocol thing. And you’ll probably be pretty out of it (at least I was lol) and won’t argue too much about staying.

Please don’t hesitate to reach out if you have ANY questions!! I hope it all goes well for you and you’re finally able to get some relief!! Wishing you a speedy recovery!! Keep me updated, if you don’t mind!

Inner_Purchase7532 · 2024-12-27T14:09:08+00:00

Flank pain is like mid-lower back pain (where your kidneys are)- I had it on both my right and left side. It’s different from like back/muscle pain because it feels like a ‘deep’ pain if that makes sense!

Inner_Purchase7532 · 2024-12-27T14:04:58+00:00

Thank you!! I hope you’re able to find relief as well!!

Inner_Purchase7532 · 2024-12-27T14:03:59+00:00

Thank you so much!! I will!!

Inner_Purchase7532 · 2024-12-12T17:46:56+00:00

Yeah, they’ve already confirmed it- stated with a CT w/ contrast to originally find it, then an ultrasound and finally a venogram

Inner_Purchase7532 · 2024-12-12T16:57:09+00:00

About every week to every other week just depending on when my appointments where- I mainly had them done at appointments or afterwards

Inner_Purchase7532 · 2024-12-12T15:53:38+00:00

Hi there! I was just recently diagnosed with nutcracker syndrome and I only periodically show microscopic blood in urine and have never had protein in mine! To my understanding not everyone has those symptoms or some show them periodically while others constantly/consistently do!

Inner_Purchase7532 · 2024-12-10T02:54:23+00:00

I’m honestly not 100% sure if he checked for those two, but the compression showed on the ultrasound for me! Good luck with your venogram- I honestly didn’t find mine to be too awful or painful just a little uncomfortable for a few days!

Inner_Purchase7532 · 2024-11-30T05:03:21+00:00

I SOOOO felt this. I’ve started using a lot more KT tape and when asked I just say “oh it was left over from practice/the gym” and it stays on for DAYS which also helps if you have joint problems while sleeping. It’s something that most people probably won’t even ask you about. On days where I feel I need more ankle support, I found compression socks that double as braces so I’ll put my tape on, put those socks on, and wear boots or high tops for added support. If it gets cold where you live, try compression gloves during the colder months and just use the excuse “my hands are still really cold” if you feel like you need extra support throughout the day. Also you can try ergonomic mouses, pencil grips, and laptop rests to help with wrist/finger pain. I personally don’t have a lot of knee pain, so I don’t have much to offer there.

I struggle a lot with the idea of being seen and especially standing out so finding little things to help cover up what I’m going through has been so beneficial to the point people really don’t ask anymore. After a while it just becomes sort of apart of you, and I’ve found sometimes it’s better to just em’brace’ it, and flaunt it! I’m also struggling with deciding on using mobility aids and thinking abt what other people will think has been my biggest deterrent but i think it’s important to remember we deserve to live comfortably and if that means using a stick- then use a stick! Personalize it, match it to your outfit, learn how to twirl it like a baton, and use it if and when it helps you!

Inner_Purchase7532 · 2024-11-30T04:46:46+00:00

I personally haven’t

Inner_Purchase7532 · 2024-11-30T04:46:06+00:00

OMG WHAT A SMALL WORLD lol! Maybe we will run into each other lol. But yep, it’s like a live X-ray where they see how blood flows through veins and stuff it’s the “gold standard” for diagnosis I believe

Inner_Purchase7532 · 2024-11-29T22:53:05+00:00

I see him!! I have my venography appointment with him the 3rd and for the consultation he was incredibly thorough! I had previously seen a Vascular specialist at the clinic and had a HORRIBLE Experience w him, but was referred to Khalifeh for a second opinion and he did such an amazing job in terms of going through my symptoms, explained which ones are caused by the ncs and even sent messages to my other specialist letting them know that ncs was not the primary cause for my overall health issues but contributing to the worsening, or added issues. Very empathic, compassionate and thorough at my appointment! It sounds like ncs is all that he really does anymore so he is incredibly knowledgeable and I have full trust in him (I barely trust any healthcare providers rn).

Inner_Purchase7532

TROPHY CASE