u/Impressive_Mood4801

I’m bracing myself for a full Reddit pile on just for asking but im just so curious…umm whats up with the downvoting pattern in here?
Im noticing it in particular with posts and comments discussing symptoms, recovery experience, surgical options, etc.
I also recently made a post asking for studies and discussion around nerve involvement and most people’s comments were downvoted to 0. Ultimately who cares about reddit karma. I was/am able to have the discussions and find connections where needed regardless of voting, but it leaves me wondering.
What’s pissing everyone off so much?
Would adding post flair to this sub help?
Do you need a hug? (Frfr)

I don’t get it

What

I’m recently diagnosed with MALS after a long history, awaiting surgical consult. I’m still learning about the condition and am having a hard time wrapping my mind around the nerve involvement. I’m interested in studies that might connect it to nervous system dysfunction/dysautonomia, but also want to learn more about the long term implications of cutting or removing that bundle. Am I misunderstanding that aspect of the procedure entirely? How does altering such a major system of nerves affect the rest of your body? What are the long term complications?

I would love to hear if you have personal experience with nerve dissection, how you feel post recovery, etc. as well as read any studies or articles. Thanks so much in advance

I had stents and coils after being diagnosed with bilateral MTS and severe PCS. My symptoms pre-surgery were immense and can be found in my post history if you’re interested.
I wanted to post an update because after the coil embolization, I had what I understood at the time as a post op inflammatory response, but I now realize was also the worsening of my MALS symptoms due to the sudden change in blood flow increasing pressure on the next compression. I felt such an intense and terrifying spectrum of symptoms that I found very difficult to put into words at the time but now that I have a better understanding of what happened and what is happening, I needed to put it all into words to fully grasp it.

After the coils I experienced severe fatigue, brain fog, dissociation, nausea, appetite loss, and near constant mid to high level sense of panic and doom. I felt anxious and depressed and removed from my body. I fell into a prolonged dissociative episode that took months to climb out of. My body had an inflammatory response to the coils which flared my mcas and pots/dysautonomia.
Every time I ate I experienced worsened digestive symptoms (which had been previously improved about 15% by the stents which were done first) including early fullness after one or two bites, breathlessness, palpitations, head rush, whooshing sensation in my neck head and chest, nausea, hiccuping, stomach pain, abdominal cramping, and cycles of constipation and diarrhea. I also felt a burning buzzing sensation in my solar plexus and developed overly an arched posture even when reclining.
It became uncomfortable to lay down flat. I usually feel a pounding sensation in my head and neck when I try to sleep flat so I’ve I had to adjust to sleeping and resting in a reclined antigravity position, though I feel best with my head slightly above my heart.

Why my MALS was missed:
After the coils I returned to my doctor and asked to be checked for MALS, SMAS, and NCS. They researched the test and found nutcracker compression. This ultrasound missed my MALS compression because the tech didn’t properly instruct me to breathe in and out fully AND I was in too much pain and too fatigued at the time to fully inhale or exhale my lungs.
After two years, I saw a new pa for eds who caught that the test wasn’t done right, reordered it, and found my celiac artery is being compressed by 70% with every exhalation.

It’s just incredible how much of a difference having an accurate story of what happened/what’s happening to you can make. I feel so rejuvenated in my will to heal now that I have what feels like the final missing piece to the great puzzle of how and why I got so so sick. It’s been ten years of symptoms and now I know that it all started because I bought a house I became hyper focused on renovating to the point I forgot to eat and lost a bunch of weight I thought I would just be able to gain back when it was all over. The weight loss triggered my MALS compression to worsen and become symptomatic and the GI, immunity issues, energy limitations and exercise intolerance followed suit from there. Plus COVID entered the picture about halfway through that window and really scrambled things up.

Anyway, thanks for coming along on my journey. I hope you don’t need this info but if you do, I hope it helps you better understand your story.

Specifically if you also have pots or chronic fatigue, did it affect those symptoms? I have a positive ultrasound for mals and as well as stents and coils for MTS and PCS. I experience some pain with eating but the dysatunomia, nausea, lack of appetite, and early fullness are my worst symptoms. I also experience intermittent constipation and occasionally vomiting, always first thing in the morning and bile.

I’m considering next steps so would appreciate your experience and input. Thanks

Has anyone else ever encountered this? My immunologist caught it when I was having insane mood swings and even worse gut issues than usual. I went off, retested after two months and they came down. From almost 260 to 135. My doctors said it was pretty unusual but I wanted to share in case it helps another.
I took bc for years as a teen and struggled immensely with my mood and mental health. Now I can’t help but wonder if this was happening all along or if something shifted in my hormones. Sigh.

Link to a study https://www.elsevier.es/en-revista-endocrinologia-diabetes-nutricion-english-ed--413-articulo-hypercupremia-secondary-oral-contraceptives-report-S2530018017301579

I have the test in the morning. When I asked the scheduler and screener they seemed unsure but said I think so. It does help with digestion. Do I give them an image of my digestive system without the help? Or current status quo. It’s only been a couple weeks since introducing the cromolyn but I’ve noticed a big reduction in symptoms after eating with it. Thanks yall

Sitting a hospital waiting room for labs. It’s a pretty quiet vibe. Some chatter, calling of numbers. Mostly everyone’s on their phones. I’m tired and took a deep breath and a little sigh came out with it. A moment later the man next to me, still scrolling, sighed a softer, quieter sigh. Reminds me of when I slowblink my cat when I can tell he’s trying settle but can’t quite figure it out. We’re all just animals

Just kidding I know exactly where my cromolyn is - it’s in my belly, it’s on my table, in my cupboard and all the pockets of every bag and place I plan to be in.

Ohhhhh cromolyn sodium how I’ve waited for you. I have not felt such immediate and clear success from a medicine since that one SNRI I took years ago that handed me my personality back on a silver platter and then I was unfortunately, heartbreakingly, allergic to every form of it available.

After taking cromolyn I notice:
- reduced nausea, stomach pain before and after eating, reduced hiccuping and indigestion
- absence of that “whooshing” pressure feeling in my head and neck for about 2-3 hours.
- huuuuge reduction of brain fog
- improved mood stability
- slight improvement in my stamina
- improvement in my chronic depression

I felt so good I forgot to take salt for a couple days and got myself into trouble lol

For real. This journey has been so long and it’s no where near over. I was feeling so defeated and lost, languishing somewhere between ‘the sickest I’ve ever been in my life’ and ‘not very healthy’ but this success with medication plus an unexpected appointment with a new EDS PA at my old rheum’s office has given me new hope. Words I never thought I’d be caught writing lol.

I also got the call for the new pa and the call that I had finally gotten off the list for the eds clinic at Cleveland after a year of waiting…literally back to back on the same day. Idk wtf shifted in the universe that day but thank you!

I was particularly shocked at the success of the appointment because this is the same rheum’s office who had previously examined me, shrugged when I said I had concerns about eds and said he didn’t know much about it before diagnosing me with fibromyalgia, mecfs, and a referral to a immunologist (who did help quite a bit with mcas).

But this is new PA is a game changer. He listened to my whole story and ordered a gastric emptying study, identified that my previous ultrasound to rule out MALS had been done incorrectly and then ordered new imaging. He encouraged me to try out the Cromolyn prescription I’d been holding onto and gave some good insight into my current gallbladder surgery quandary. I’m just so relieved to finally feel like I have someone qualified looking at the whole picture with me. The relief alone is euphoric.

I may have a MALS surgery or/and gallbladder removal ahead of me but i feel so much more confident going into this kind of thing knowing I have some really great people on my team looking out for me.

Never give up, never surrender! Or whatever

Awesome. Just awesome.

Anyway, this ends my out of character, optimistic expression of gratitude toward my circumstances. Thanks for joining me. I hope you find your cromolyn sodium real soon 💛

I’m olive. I’ve always had some peach fuzz, was actually historically fond of the little blonde accent hairs.. but it’s coming in pretty thick lately and I’m starting to think about removing it. I tried bleach a couple times as a teen and hair once (horror show) but my skin is even more sensitive these days.
Soo what are we doing? What are the best options? Sugar waxing? Regular waxing? Go at it with one of those face shavers?

Gimme the scoop. My eyebrow(s) are also listening 👀

I eat baby food pouches for breakfast now. That’s it. It solved my morning food struggle and spiral about trying to nourish myself while being nauseous or not having energy or whatever. Idk why I felt/feel so weird and embarrassed about it. It’s just fruits and vegetables someone else cooked and blended up. They’re great for potassium, calcium, and vitamin c usually. Even has some fiber which helps keep me from crashing in the afternoon. Hell, when I’m feeling good after the pouches sometimes I follow it up with a chocolate milk protein shake. I’m living a toddlers dream.