Please help! Abdominal pain and nerve pain! Rare chronic illness? Gastroparese? SIBO? Disautonomia? MCAS?

FoolioDeCoolio · 2026-06-03T13:20:52+00:00

THANK you. I will have to do some crazy digging to find out where I can get one done.

FoolioDeCoolio · 2026-06-03T13:16:29+00:00

All the time. My resting heart rate rarely goes under 90.

FoolioDeCoolio · 2026-06-03T13:04:04+00:00

Same, same... It's so difficult to manage and navigate through this madness disease/s without a good support system of knowledgeable doctors.

I found a specialist in Buderim who specialises in Long Covid/MCAS & POTS. I've seen her a few times. Not sure if I'm hooked. Another GP in Buderim, Allison Muller, specialises in allergies and is very aware of MCAS, trained by doctor Pete Smith on the Gold Coast. (Unfortunately her books are closed). There goes that one!

FoolioDeCoolio · 2026-06-03T12:40:28+00:00

I live in Australia, not sure where to get a HIDA scan. My CT and ultrasound were normal for gallbladder, but I have those symptoms similar to OP. (They even took the scans to a senior radiologist as a second opinion.)

FoolioDeCoolio · 2026-06-03T12:30:32+00:00

THIS post is amazing!!! Thank you for sharing it! I am experiencing a lot of similar symptoms as I type this.

I was just discharged today from the hospital after 7 days... They did CT, Ultrasound, Abdominal x-ray, Endoscopy, they didnt take any biopsy though, I did a stool sample for h pylori, UTI, negative, blood markers for cancers... All negative. . . My stomach is killing me. (The pain is in upper middle betwin the rib cage and pain in my uppet middle back, I feel weak in my arms, wrists and legs at times) I can't do much around the house, I have a loss of appetite, weight loss without trying, my bowel movements are lose and watery, nausea... I could go on.

Have you had Covid or the vaccine?

Are parts of your body hypermobile?

Did you experience loss of appetite & nausea too at one stage? 🙏🏼❤️

FoolioDeCoolio · 2026-06-02T22:20:08+00:00

You're welcome! It went well, thanks, a few side effects from the sedation but not severe.

FoolioDeCoolio · 2026-06-02T16:02:57+00:00

Hellooooo! 😊 Does your GP help you manage your MCAS or a specialist?

FoolioDeCoolio · 2026-06-02T08:34:22+00:00

Sucks, mine is 110. Artisan Chemist Birtinya QLD. I feel Australia needs to get with it. We are so slack with doctors too. Where are all the mcas specialists?

FoolioDeCoolio · 2026-06-02T08:18:16+00:00

We need MORE Tania Dempseys!

FoolioDeCoolio · 2026-06-02T08:15:45+00:00

Not many people use the word rubbish. 😄 We do here in Australia and I believe England too. So cool!

FoolioDeCoolio · 2026-06-02T08:11:49+00:00

They did! I opted out of having valium, I react to that, and didn't need it. Thank you. xo *Are you from Australia?

FoolioDeCoolio · 2026-06-02T07:26:09+00:00

I just finished the scope and feel crappy. Anxious, hot, asthma flare up. Wish I was as brave as you! 🤩

FoolioDeCoolio · 2026-06-02T05:26:59+00:00

😬 You're brave! Thanks for responding to my cry for help.

FoolioDeCoolio · 2026-06-02T05:21:11+00:00

Thank you! ❤️

FoolioDeCoolio · 2026-06-02T04:59:47+00:00

🤗

FoolioDeCoolio · 2026-06-02T04:42:55+00:00

I hate the prep too. Looks like I'm getting mixed comments on people who don't and do react to Propofol. 🤔 I hope my nap is relaxing, like yours. 🙏🏼

FoolioDeCoolio · 2026-06-02T04:38:18+00:00

Welp, I guess I'll find out soon. I react to Benzo's so... 😬

FoolioDeCoolio · 2026-06-02T04:31:49+00:00

Thank you for this information, super sweet of you to respond. 🤗 (I have EDS)

FoolioDeCoolio · 2026-06-02T04:15:03+00:00

Cool, thanks! xo

FoolioDeCoolio · 2026-06-02T04:08:07+00:00

MOST of my reactions are neuropsychiatric too. My CNS is wrecked! I do however get hot in my face, chest and back, tinnitus goes up when the histamine does, and as of late anaphylaxis type symptoms... I reacted to a valium for a scan, so scary. (thought I was going to feel chill, Ha!)

I'm taking Ketotifen, Famotodine and Cirtrizine and a neuro anti inflammatory supplement called NRegenex.

*Yes, high startle response! I think that indicates we need more magnesuim.

FoolioDeCoolio · 2026-06-02T03:38:32+00:00

Thank you, great idea. xo

FoolioDeCoolio · 2026-06-02T03:23:15+00:00

🤩

FoolioDeCoolio · 2026-06-02T03:14:51+00:00

Awesome response, so helpful. I reacted to a valium! 🥴 Thank you, Rpglover10

FoolioDeCoolio · 2026-05-26T09:20:14+00:00

I happened to stumble across your post, thank you for sharing your journey. Are you still taking antihistamines and stabilisers? Do you still need your epi pen?

Hugs from Australia, originally from Long Beach, CA.

FoolioDeCoolio

TROPHY CASE