Posts by Laura Williams74

Hi,

So, it's Tuesday and I'm checking in..

I spent the entire weekend collecting urine samples for 5-HIAA, 5-HTP, and histamine.. On Monday, I waited at the hospital for four hours just to hand over the bottles with my referral.. After that, I was supposed to pick up some kind of slip from the endocrinology lab (that new white building behind the green one), but I never got it because I was already running incredibly late for work, and since I had more tests scheduled today, I couldn't afford to wait any longer.
And apparently, they told me that histamine and 5-HTP tests don't even exist—that they don't perform those specific screenings. What on earth is that about?
The doctor at the hospital wrote them down herself..

Does anyone know what this means? I mean, isn't histamine related to allergies?...

I complained at the front desk, and the woman there basically told me to feel free to call her manager since she’d already been warned about the patient registration issues, and suggested I just head over there. After pacing around and playing mental ping-pong with the situation, I was losing my mind, so I just left for work... I'm hoping I can still get my results without that famous little slip of paper..

I went in for blood work today, and surprisingly, that went really fast.. At the local clinic (near the downtown area)

Anyway, I had an ultrasound at Medikol. While they were scanning my abdomen, I felt a sharp pain on my left side, right under my ribs. I explained my symptoms, fully convinced it was my kidney (my skin is itching, especially my shoulders, shoulder blades, and arms, plus a light urticaria, and pains on the left radiating into my back).. But when they told me the kidney looks fine and it's likely my intestines, and that I might need a colonoscopy.. hurray!! Just what I needed. They did say I should do a fecal occult blood test first though.. I just don't know how many more times I can ask my boss for time off...

It actually makes sense, because those pains and symptoms are always tied to my urge to go, which comes and goes... And quite often when I wake up, I have cramps, like an urge, but nothing happens... Now I just have to connect the bone pain and the lump on my left hand, near the base of my thumb...(arthritis?)...

I also have a bone scintigraphy left to do based on the recommendation from that same doctor at the hospital... but I honestly don't know when I'll manage that, maybe after I see my GP..

That's all for now, cheers everyone..

You've got a point there, Angela Wright...

Anyway, I'll touch base on Tuesday once the UZVO meeting wraps up... just to get things moving... thanks.

Forgive me, I know most of you already have a diagnosis in hand, but I don’t have anything official yet. Looking back, my previous post was a bit... unrefined, I suppose. Panic just took over. About six months ago, I had to walk away from my job. My heart started racing uncontrollably, my face flushed out of nowhere... then this sharp, burning pain under my arm. I ended up heading straight to the ER—because, honestly, it felt like the tenth time I'd had an episode like that—and that's when the doctor first mentioned cancer. She looked at me and said, "These symptoms aren't anything to take lightly; you need testing. This could potentially be a carcinoid tumor." When I asked where, she just pointed toward my abdomen and said, somewhere in there...

I've got a bump in my ear, and frankly, I'm not feeling great... but here I am. Reading through your stories, I've actually learned so much from all of you. It's made me realize that this doesn't just happen to "some random person"—it's right here among us. And it's better to be proactive, to get the tests and the screenings done early...

Of course, I'm hoping it's nothing, but as time goes on, that certainty is slipping away... anyway, sorry again. I came charging in here in a total panic before even having a diagnosis. A few years back, my grandfather passed away from lung cancer. He lived down in Miami; I didn't see him often—actually, I hadn't seen him in years. I feel bad about that now, but maybe that's why I didn't truly "grasp" the reality of it like some of you who have been caring for your loved ones... but now, it seems like everywhere I turn, no matter who I talk to, the word "cancer" pops up. Even that doctor during my ER visit...

Stay strong. Lately, I've been falling asleep to prayer—praying for my family, for everyone who is sick... and even for those I'm at odds with. It helps me keep the resentment at bay...
It feels like I'm just scattering all this negative energy that seems to be swirling around me... but there's no doctor present for that...

Oh, thank you all so much,

I noticed some changes today too... I usually follow the non-profit organization forums and this one for support from those dealing with serious illnesses...

Honestly, my biggest fear is what happens if someone targets me while I'm looking after my little one. I'm a single mom, and lately, I've had to miss quite a bit of work for testing, which feels terrible... but once things start moving, they just don't stop.

I'm waiting for this Tuesday to go back for my ultrasound at Mayo Clinic, and then I have to see my doctor again to get a referral... I'm not even sure if I should be seeing an oncologist or an internist...

And trying to organize everything is such a nightmare. I have to drop my kid off at daycare every morning, and I feel safest handling appointments while he's there...

So, today I noticed these tiny red spots on my left hand. It’s strange, they flared up overnight (I know, I sound like a hypochondriac) but I keep telling everyone in my family that I don't feel right—my godmother is a doctor, a real brother to me—but she just ignores me. She says it's just stress, or being a single parent, blah, blah... but I can feel that something is wrong.

I've been reading about symptoms on the non-profit organization sites, and I recognize several of them, which is why I'm so scared... I know, I'm trying to stay positive, but when you have a child, the panic just hits harder...

Thank you all... as soon as I find out something on Tuesday, I'll let you know. I plan to list out all my symptoms and I'm wondering if anything will actually show up...

I read about 5-HIAA in urine. Apparently, it's done when they suspect carcinoid (tomorrow I'm going to see my brother for instructions and some acid so I can start collecting urine this weekend), and if the levels of 5-HIAA, histamine, and cortisol in the urine aren't right, there's a suspicion...

Please keep your fingers crossed for me. I'm terrified, but hopefully, something will finally be clarified...

Oh, and is there anything less aggressive than a bone scan for checking bones? Something easier to undergo...

Thanks again to everyone...

I feel like I'm losing my mind with all of this. I'd honestly rather just get a full-body CT scan right now, because by the time all these tests are finished, so much time will have passed. Timing is everything—you have to catch it early to fight it. God, I'm just spiraling into depression...

I’ve been reading your posts for a long time now... I want nothing but the absolute best for everyone here—above all, I hope you find healing, and that things finally start looking up... stay strong, keep your faith... this whole thing has truly become a monster..

And honestly, given how my own health situation is unfolding, I think I might be joining your ranks soon... once I get an official diagnosis...

I'm 31, a single mom, and I'll update you all once I have concrete news today. I read a lot here, and I truly believe it’s vital that we share everything—how things progress for each of us, from those first symptoms through the diagnosis... the medications, and everything else that comes with it...

Amanda Miller69, Grace Fowler, and the rest of you... I know how incredibly hard this is. Knowing you can't even get decent medical leave just to care for a loved one, it’s just... it's soul-crushing. Sometimes doctors can be so blunt and harsh in the way they speak; it makes it so difficult to hold onto hope. I'm sending you all strength and hope, and I completely agree with what slyseal28 wrote.

God, this damn thing... such a vile, sneaky piece of work....

Thanks... honestly, the rash isn't even that intense. It just gets all red after I shower or if it starts itching... I don't know

What’s actually weighing on me is this bone pain, plus the stomach and back aches... I'm trying to figure out where to even start with testing, but everything takes months of waiting. Sure, I can pay for some private appointments, but I can't afford to go that route for everything.

Maybe an internist? My OBGYN didn't find anything unusual, aside from those issues with my period, but we'll just handle that with the pill.

Anyway, thanks a lot,

Does an ultrasound show what's going on with internal organs—like tumors or cancer—or is a CT scan more reliable?

And that trembling sensation... that pulsing feeling... I don't even know how to describe it. But that pain on the left side of my waist, near the abdomen, is what's really killing me (is that what showed up on the ultrasound?)

thanks

Hi everyone,

Here’s the situation. About six months ago, my period stopped completely. It finally came back after a course of testosterone, but during that whole stretch, I was dealing with all sorts of other symptoms. Occasional heart palpitations, facial flushing, an urgent need to use the bathroom... plus skin itching. Now the itchiness is mostly concentrated on my chest and shoulders—redness, a burning sensation, followed by itching and what feels like a mild hives breakout.

But over time, the pain has set in. I have pain in my left abdomen that radiates up into my back, specifically toward my shoulder blades. There's also some light nausea. Lately, I've been feeling pain in my pelvis, my left foot, and my heel, which makes walking difficult.

I get frequent headaches too.

In terms of testing, I've had a head CT—everything looked normal there. I also had a gastroscopy, which resulted in a diagnosis of gastritis. An abdominal ultrasound suggested there might be stones in my left kidney? They told me I should get an X-ray to confirm if they are actually stones, just to rule out a blood clot, but my doctor immediately waved that idea away, saying the ultrasound is more reliable and why bother with unnecessary radiation...

Should I push for an abdominal CT? I just feel so off. I'm exhausted, anxious, and the pain is constant. Sometimes it feels like my entire body aches, almost like it's in my bones.
My doctor keeps insisting that because I'm young, everything must be fine. But sometimes I get this sharp, stabbing sensation that feels like it's spreading toward my heart.

It's hard to suggest specific tests to my doctor when I'm expecting him to be the one leading the way.

Would it be worth checking tumor markers? At the ER, they mentioned things like 24-hour urine tests and 5-HIAA (does anyone know what that is?) and a bone scan, though I haven't been able to schedule the scan yet.

I waited two months just for that abdominal ultrasound... so while I'm waiting for the next steps, what else would you recommend?

Also, I frequently feel these pulsations, like a "fluttering" sensation in my abdomen, my glutes, and along my left ribcage...

Thanks.😢