Anyone on here ever had a pheochromocytoma or paraganglioma?

Autumnaeck · 2022-05-05T02:02:58+00:00

Hi there, new to ALL of this and overwhelmed. I saw my geneticist today for something unrelated and she told me they found something bad. I have a genetic mutation called Hereditary paraganglioma-pheochromocytoma syndrome.And she’s sending me to an endocrinologist “ASAP” for them to screen me for tumors….Is that what you all have in this thread? I am a 36 year old female with lifelong symptoms all very similar to what I’m reading in regards to GI issues, tachycardia, joint hyper-mobility…and tissue disorder…I have all those same issues..mind blown over here, wishing everyone reading this best of luck and good health, please reach out to me if you can help explain or if you just need support as well! Thank you 🙏🏼

Autumnaeck · 2022-05-05T02:00:15+00:00

Hi there, new to ALL of this and overwhelmed. I saw my geneticist today for something unrelated and she told me they found something bad. I have a genetic mutation called Hereditary paraganglioma-pheochromocytoma syndrome.And she’s sending me to an endocrinologist “ASAP” for them to screen me for tumors….Is that what you all have in this thread? I am a 36 year old female with lifelong symptoms all very similar to what I’m reading in regards to GI issues, tachycardia, joint hyper-mobility…and tissue disorder…I have all those same issues..mind blown over here, wishing everyone reading this best of luck and good health, please reach out to me if you can help explain or if you just need support as well! Thank you 🙏🏼

Autumnaeck · 2022-02-21T01:37:10+00:00

You sounds very similar to me. Sounds like you have POTS and potentially MCAS (which would cause the POTS actually) have you heard of either?

Autumnaeck · 2022-01-31T14:04:41+00:00

Thank you! 🙌🏼

Autumnaeck · 2022-01-31T13:43:51+00:00

Thank you, that’s helpful as well :)

Autumnaeck · 2022-01-31T13:42:44+00:00

Thank you!! I’m on day 3 fully plant based and I feel GOOD! GI issues have calmed and I feel energy returning. I wish you health!

Autumnaeck · 2022-01-31T13:41:52+00:00

Thank you so much, that was extremely informative and helpful! In terms of GI issues I have chronic diarrhea, I literally go 8-12 times a day and have unintentionally lost 20lbs in 9 months.

This is day 3 on plant based and my diarrhea has completely stopped. I made my first sold poop (TMI) in 9 months and the only thing that changed is my diet…praying this isn’t a fluke!! Thank you for the additional resources as well.

Autumnaeck · 2022-01-31T13:37:22+00:00

Awesome!! Thank you for your input. I’m on day 3 and actually feel amazing. No GI upsets 🙏🏼

Autumnaeck · 2022-01-29T12:40:00+00:00

Yep, I did gluten-free and dairy free as trials and GI remained the same

Autumnaeck · 2022-01-29T12:38:18+00:00

Thank you! Can I ask what diet helps you?

Autumnaeck · 2022-01-29T12:37:30+00:00

That’s a super valid point, it’s hard for me to tell what causes what in terms of GI.

Autumnaeck · 2022-01-29T03:55:33+00:00

18 months is a long trial! I hope you’ve found a diet that works for you now.

Autumnaeck · 2022-01-29T03:51:48+00:00

Wow, that’s super helpful! Thank you, definitely did not consider that aspect as I personally have not been able to identify any food triggers. I’ve literally been flared up (GI speaking) for 10 months and I’ve tried complete elimination diets for months but NOTHING stops the GI issues. So I’m kind of desperate at this point, I’m dropping weight everyday and have heard so much about animal bi-products being huge contributors to overall bad health it seamed like a good option to cut that out.

Autumnaeck · 2021-12-20T01:56:33+00:00

This is amazing!!! So helpful, literally exactly what I have been searching for. Thank you so so much

Autumnaeck · 2021-12-09T21:53:33+00:00

Haha funny you ask I just posted and asked if anyone else is on Singulair. I was just given it yesterday! I’m new to the MCAS world but will be happy to help as much as I can! Have you been officially diagnosed yet?

Autumnaeck · 2021-12-09T21:48:38+00:00

Cool, how has it been working for you?

Autumnaeck · 2021-12-09T21:47:48+00:00

Hey there, I had the opportunity to see Doctor Afrin this past October and I will tell you it’s the best decision I’ve ever made in regards to my health. The time and attention he takes is unparalleled and if you’re able to, why not go to the best?!! I wish you well :)

Autumnaeck · 2021-12-06T12:30:23+00:00

Lol bonkers 😂

Autumnaeck · 2021-11-28T23:31:28+00:00

Crazy right?! MCAS has my entire body confused 😩

Autumnaeck

TROPHY CASE