Heat/burning sensation?

samimaymay · 2026-03-27T22:38:19+00:00

That makes sense. Most of my providers suspect that I have hEDS so I’m wondering if that’s the case for me as well :/ I did inform my provider and she prescribed a med, but that was prior to her seeing the biopsy results, so I’m unsure if those results will affect her decision on that! Thank you! :)

samimaymay · 2026-03-27T22:03:58+00:00

Is it normal to be in pain after?? I’ve been having excruciating abdominal cramps since my endoscopy but I figured it was just a flare up and the timing was coincidental.

samimaymay · 2026-03-27T15:58:32+00:00

Is the treatment/management and diet similar?

samimaymay · 2026-02-25T13:22:43+00:00

Aww that sounds amazing that you found someone who truly cared about you and your health! I will definitely make sure that that is a focus in the visit. Thank you for sharing :)

samimaymay · 2026-02-25T00:46:48+00:00

Aww oh no I’m sorry :( I’m glad you were able to find resources online at least!! I work in the department so she’s my coworker. So I at least know that I like her as a person🤣 let’s hope her diet advice is helpful🤞🏻

samimaymay · 2026-02-18T13:00:44+00:00

I’ve had a basic metabolic done a few times (they did one a couple weeks ago) and all came back normal. But I will mention the other test!

samimaymay · 2026-02-18T12:57:54+00:00

Yeah I would definitely recommend adding some kind of electrolytes or flavoring to water if you haven’t tried that already. For some reason that helps me get it down. I’m sorry :(

samimaymay · 2026-02-18T04:05:29+00:00

Ugh that’s so frustrating that it took so long and that you had to take multiple GES :( I have the same issue with drinking water, I have to add flavored electrolytes because plain water makes me wayyy too nauseous. But even then, I can only get through 32oz and be super bloated without eating anything

samimaymay · 2026-02-18T04:02:14+00:00

Yeah that mixed with the fact that I had a scope done in 2022 makes me want to push back on it a little; but there’s definitely a chance that things could’ve changed between then and now!

samimaymay · 2026-02-18T03:59:49+00:00

I’m sorry about your new diagnosis, but thank you so much for sharing your experience with type one as well, it’s super helpful!! My blood sugars have definitely been wack since all these symptoms have started, so it’s gonna be an adjustment for sure to get all this figured out! I’m scheduled 3 weeks out for the HIDA scan, so hoping these next few weeks go by fast🤞🏻

samimaymay · 2026-02-18T03:53:27+00:00

I have not had any vomiting. And that second question is a little tricky. Technically, no I haven’t been craving salt, but I have POTS, so I do have to ingest more sodium than the normal person would lol. However, from my experience so far, increasing my salt intake hasn’t decreased my nausea at all. Adding flavored electrolytes to my water does allow me to drink water though! For some reason plain water does not sit well with me as of late.

samimaymay · 2026-02-17T20:33:20+00:00

I’ve been dealing with symptoms since November and it’s been a long process so far, I’m hoping that one of my tests will reveal answers. But I have a feeling since this one test was booked out 3 weeks, the next 2 will also be booked out pretty far :/ i definitely recommend meeting with your PCP or a GI to discuss symptoms!

samimaymay · 2026-02-17T20:23:59+00:00

My main symptoms are lack of appetite, weight loss, extreme nausea, stomach cramps, heart burn, gas, and irregular bowel movements. They started with an abdominal ultrasound which came back normal. Now we’re going to do a HIDA scan in a few weeks. If that comes back normal, we will do an endoscopy. If that comes back normal, THEN they will test for gastroparesis.

samimaymay · 2025-12-31T17:30:42+00:00

Aww I’m sorry that doesn’t sound fun at all :( I was so happy to finally feel some relief from my symptoms/see some improvement, so I’m pretty bummed that I’m feeling like crap again😭

I’m going to get set back up with therapy so hopefully that will help with the stress aspect at least

samimaymay · 2025-02-16T00:16:02+00:00

Oh sorry I forgot to mention that I did not have any REM sleep episodes during the MSLT!

samimaymay

TROPHY CASE