Posts by darkpuma5

Let’s start with the most obvious stuff... she doesn't shop at those massive big-box retailers because the parking spots are usually way too far away, and since she struggles with her balance and all that, it's just tough. So instead, she’ll pull up right in front of a smaller corner store and just load things straight into the car.

I'm not saying she's going to suddenly get some huge payout or anything, but little things like that would make her life so much easier. That was just an example.

Apparently, there are all sorts of different tax credits and relief programs out there, so it makes me wonder—have we been overpaying for years when we didn't actually have to?

How does the disability rating process actually work?

I’m asking for my mom. She’s already retired, but her doctor took one look at her recent test results and mentioned that if she were still working, she could potentially qualify for disability benefits. Of course, since she’s already receiving her retirement, it doesn't change much right now.

Even so, I'm curious—where do these assessments take place and what kind of benefits can someone actually get? To be honest, we’ve been so focused on managing her health lately that we haven't given any thought to the legal or financial side of things...

crimsonharbor55 said:I’ve been off the grid for a bit because of my T-cell issues, otherwise I would have messaged you all sooner! I’m slowly getting back into the swing of things. I finally picked up some shampoo and conditioner that don't cause any reactions, so I’m feeling pretty great about that. I also started tracking what I eat to see if certain foods trigger anything. The other day, I grabbed one of those tea-flavored spreads from Whole Foods—usually, I can't stand pâtés or that kind of stuff—and let's just say it didn't end well. I actually had to take some Fexofenadine (my doctor prescribed that for when things go south). Anyway, I really hope this thread doesn't turn into a "healthy eating" club. I'd rather we just focus on talking to each other and helping manage the actual pain caused by these allergies.
I didn't quite follow that one post about the liver, though. As far as I know, the liver doesn't have much to do with allergies. Its job is basically sorting through nutrients from our food, so it might react to additives, sure, but the liver isn't what causes anaphylaxis or breathing issues. That's definitely an immune system thing. At least, that's how I understand it.🙂

So, how does your reaction actually show up?
I've been dealing with this body rash for two or three years now, and I honestly can't figure out the trigger... it flares up slightly and then just retreats again.

They suspected allergies, but nobody really took it seriously. 🙂

It's starting to get on my nerves now. 🙂

Hey there,

So... basically, a standard bronchoscopy isn't enough to get the tissue sample they're looking for.

The doctors want to try a radiographic bronchoscopy instead, but the hospital in my small town in the Midwest doesn't offer that anymore.

Does anyone know if that procedure is available at any other hospitals here in the US?

Or maybe somewhere nearby outside of the States?

Thanks!

Christian Morris2 said:I’m curious—is being near a 10 kV transformer actually bad for your health? I work right next to one, maybe about 15 feet away, separated only by a wall. The transformer is basically just one floor down from my workspace. People say the radiation levels are tiny, but is being exposed to it for an 8-hour shift at work actually harmful?

Honestly, I wouldn't be 😁

wiredcobra11 said:I've been on them for about three months now. So far, I haven't noticed a single side effect.

What kind of dose are you taking? And do they actually do anything for blood pressure?

Hey there,

Is anyone else taking these pills experiencing any side effects besides what’s listed on the box?

Like, I'm talking heavy heart palpitations, skin rashes, night sweats, stuff like that.

Oh, and I totally forgot to mention the light flashes in my vision and the dizziness too...
😁 Maybe I should also add that the tablets aren't even actually working for me?

Hey there,

Can anyone walk me through what polykaryotic cylindrical cells actually are? Or maybe point me toward a decent link that explains it?

I've been digging through Google for ages and I'm coming up empty.

Is it possible there's a typo in my lab results?

Thanks!

Sam Hall15 said:Given how much time has passed since those first symptoms appeared, a tumor seems less likely now—specifically regarding carcinoid syndrome, though a pheochromocytoma could certainly persist that long... I wonder if they ran a urine test for vanillylmandelic acid. Those hypertensive crises really need to be investigated and addressed, as they pose such a high risk for a brain hemorrhage... Is there a discharge summary available from when she was at the Mayo Clinic for those tests? If you'd like, feel free to send it via DM.

I'll scan everything and send it over in two or three days. I've been pulling 12-hour shifts lately, so I'm just physically wiped out. 😢

Thanks so much!

Regarding that VMA thing—I actually think they did run it, because I remember something about an "unusual acid" being mentioned. I'll get everything sent over soon.

Quick update on where things stand. My mom is totally siding with Dr. House on this one—it’s all just so confusing. 😉

Her first major blood pressure spike happened back in May 1999. It lasted about a day; they stabilized her at the ER and sent her straight home. She actually drove herself there, and we ended up carrying her back inside!

After that, she’d have a spike maybe once a year. They’d bring it down at the ER, and everything would seem fine.

The thing is, for the last 20 or so years, she’s had blood in her urine, and nobody has ever been able to figure out why. Finally, a really sharp nephrologist at the Mayo Clinic decided enough was enough and insisted it was time to get some real answers. She spent three weeks undergoing testing at the Mayo Clinic, where they were constantly running urine tests and doing every scan imaginable. I can look through her records—she has all the results printed out on A4 sheets—just let me know which specific ones you want me to check. Long story short, out of all those tests, the only thing they found was that one kidney is smaller and more cystic, but the function is perfectly fine. Nothing else.

During those scans, they also discovered that her left carotid artery is about 90% blocked.

That’s when all the carotid testing and surgical prep started.

While waiting for the surgery, if her blood pressure even touched 130, she wouldn't be able to walk anymore.

But those previous spikes used to be super RARE, usually lasting just a few hours or maybe a single day.

Right after the surgery, she had extremely high blood pressure for two days—hitting close to 200—but they managed to get it under control.

And now, we're dealing with these two episodes that last anywhere from a week to ten days.

I’m assuming they probably checked her adrenal glands during those three weeks of testing over at the Mayo Clinic.

But if it *is* a tumor, wouldn't that have shown up somewhere in the last eight years?

Angela Wright said:Look, darkpuma5, based on what my own family has dealt with, I’ve got to be blunt: you need to pull some serious strings immediately. You either find a heavy hitter—someone with real clout—to get you admitted for a full, exhaustive workup, or you bypass the system entirely and go private. Waiting around for some overworked doctor to actually care about your case is a gamble that usually ends in tragedy. And when it does, nobody takes the blame, leaving you or your loved ones to deal with the permanent fallout.

The only other move is to play dirty. Be relentless, be a nuisance, and start threatening to call the local news or grab a camera crew. Maybe then they'll suddenly find the motivation to act... but honestly, it's a crapshoot, and fighting that kind of battle is absolutely soul-crushing.👎

Ugh, look... It’s not like I’m just sitting here with my hands folded waiting. 😢

I actually took her to a private cardiologist because that was the recommendation, given how bad her vitals have been looking lately. Honestly? The exam turned out great. It was such a relief to see that her heart and the surrounding area are actually in pretty good shape.

But we were told she needs to see a nephrologist ASAP. I called the specialist over and over, and after being brushed off for two days, our primary care doctor (after three separate calls!) finally gave us an emergency referral. We managed to pull that off too, even though they originally tried to schedule us three weeks out. So, we've ruled out kidney issues.

Then we were told to consult with her surgeon. I actually ended up ditching work for a day just to corner him at the hospital. I know, I know—it feels tacky to hunt doctors down like that, and I felt so embarrassed doing it, but he was incredibly understanding. He actually sat down to talk to me, gave me some guidance on what to do next, and told me I was doing the right things.

Next step: we went to a private clinic for thyroid hormone testing because we wanted fast results to catch everything in time. And guess what? Those levels are normal too.

Now I’m calling ERs and they’re turning me away.

Look, money isn't even the issue here. I don't have a fortune, but I'll spend every last cent I have if it makes her feel better. I'm just stuck. I don't know where to turn anymore. I need help. 😢 Where do I go? Who do I talk to?

So I just spent some time looking up what a pheochromocytoma actually is. I was at the nephrologist's office earlier with those lab results from the ER.

The nephrologist mentioned that the blood work from the emergency room looked fine.
But it makes me wonder—should he have picked up on anything based on those initial tests, or is this something that definitely requires more digging and extra testing?

Sam Hall15 said:It must be incredibly draining and frustrating for your mother and your whole family, but every hypertensive crisis is an emergency. You need to take her to the hospital or the ER every single time one occurs, especially if she shows severe symptoms like dizziness, chest tightness, pain anywhere, or fainting... the risks involved include stroke, heart attack, kidney failure, or heart hypertrophy leading to eventual decompensation... this definitely needs medical treatment... I wonder how they haven't identified the pattern of oscillations yet? Have they ruled out a pheochromocytoma? To me, this looks like a textbook case... and perhaps there is an issue with the carotid sinus, which contains those baroreceptors responsible for blood pressure regulation

Her primary doctor gave her an emergency referral for inpatient care at internal medicine to figure out what was causing everything during her last episode. So she goes there, they look over the labs from the ER, and then they just send her home because they claim they don't know what else to do. Honestly, I was already losing my mind by then.

She’s been to the ER twice now. They ran blood work, did chest X-rays and heart scans, gave her Tinidil, and sent her right back home. And get this—we were sitting there waiting for two or three hours before that, and I actually collapsed in her arms a couple of times.

When I call the emergency line, they basically tell me there’s nothing they can do, other than drive her to the hospital just to get more Tinidil.

I mean, I am totally flying blind here! 😢

All those symptoms—the dizziness, the chest tightness, any kind of pain (headaches, etc.), or those brief moments where she blacks out for a few seconds... yeah, she's got them all.

Wait, what exactly is a pheochromocytoma? Let me go Google that real quick.

And about that "maybe they messed up the carotid sinus" part—how would I even know if that's what's happening?

The thing is, it isn't constant. She'll be fine for a few weeks, and then it just hits her again. Right now, I'm just waiting for it to pass... She's lying in bed taking the normabel (per the doctor's orders), and I'm checking her blood pressure every 45 minutes while she deals with these massive headaches and tries to sleep.

I am seriously on the edge of a breakdown. I'm at a loss for words and I have no idea how to help her.

Dr. Lovricevic was her surgeon, and he mentioned that based on the Color Digital results, everything looks okay for now, but he admitted we might never actually find out why her blood pressure is swinging like this. 😢

I’ll try my best to lay everything out clearly for you all.

My mom has always been someone with low blood pressure—usually sitting around 90/60 or up to 105/60. About four months ago, she had carotid artery surgery, but during the procedure, she actually suffered a mini-stroke. On the surface, it didn't seem to leave any lasting damage. The side they operated on recovered nicely, though the other carotid is about 50% blocked.

Then, about two and a half months after the surgery, she hit a rough patch where her blood pressure went totally haywire for about ten days. We were watching right in front of us as it would spike up to 200/100 and then plummet back down to 100/60 within thirty minutes. I can't even begin to tell you how exhausting that is for her. After those ten days, things finally leveled out. We did the whole works—heart tests, kidney checks, thyroid, blood work—and everything came back clean.

Things were fine for three weeks, but now it’s starting all over again. Given her recent surgery and the fact that she’s lived with low blood pressure her entire life, the doctors just gave her Tinidil to take as needed and nothing else.

The problem is, she’s allergic to most medications. Because of that, nobody wants to risk prescribing anything else for her blood pressure without extensive testing first. But honestly, trying to run tests while her pressure is swinging wildly every 10 or 15 minutes just isn't an option right now.

So, here’s what’s weighing on me. If I took her into the hospital, would they actually be able to do anything better than we are at home? All the tests we were advised to do have already been completed, and since she can't take other meds, I feel stuck.

Or should I just keep a close eye on her at home and hope this crisis passes quickly?
To be honest, I'm terrified that something serious might happen to her. 😢

Seriously, don't mess around—go see a doctor.
I went through something similar where I just waited for the pain to go away, and ten days later, my arms and legs started tingling out of nowhere... 😢

It’s way better to get checked out now and confirm everything is fine than to deal with a nasty surprise down the road. 😢 Just take some time for yourself and get it sorted. Good luck.

David Parker5 said:We were thinking about picking up a Kosmodisk for a friend's birthday since he’s constantly dealing with back pain and terrible posture, so I wanted to see if anyone here actually has experience with them or has used one before.

Is this just some fancy way to get scammed, or does the thing actually work?

I have some pretty significant spinal issues myself, and my doctor flat-out told me not to use one.
He said it feels great while you're wearing it, but the catch is that your core muscles—the ones that actually support your spine—start getting lazy. Then, once you stop wearing it, your posture can end up even worse because those muscles aren't strong enough to hold you up on their own.

Now, obviously, that’s just my take based on what a physical therapist told me.
If anyone out there thinks differently, please, let me know! I'm all ears.

If his back is constantly bothering him, he should try strengthening those lower back muscles in a pool. Swimming is amazing for the spine; it helps kill the pain and helps with posture naturally. 👍

If you really want to help him out, maybe grab him an exercise ball instead. Sitting on one forces you to sit upright and stay balanced, otherwise, you just tip right over. It builds those core muscles, making things easier in the long run. Or even those orthopedic seat cushions you see at stores like Staples—they force you to maintain better posture by engaging the right muscles. 😉 I don't mean you'll go flying onto the floor, but you definitely lose your balance if you slouch.

Honestly, you could just ask someone at a specialized medical supply store; they’ll probably have plenty of other ideas too.

Olivia Sanchez16 said:They’re asking me to get these checked out: FSH, LH, E2, TSH, fT3, fT4, PRL, free testosterone, FAI, SHBG, androstenedione, DHEA-S, and 17-OHP.

Check this out

electricsailor13 said:Hey everyone! Does anyone know what the cheapest rimless glasses usually run? I'm just looking for the basic setup—lenses, the bridge, and the temples. I've been browsing around Seattle a bit, but I haven't found anything cheaper than $433. Should I keep hunting or maybe look at different styles entirely? 😍

Mine ended up being about $200 and they're honestly perfect. I actually have a specific shop we all go to for frames because their prices are pretty reasonable..

I went with the high-end blue light lenses for computer work, which were roughly 500-$200.

The whole thing came out to somewhere between 1100 and $400. 🙂

Could you find them cheaper? 😉

Angela Wright said:Didn't her throat get pretty sore from those early morning intubations? Watch out, since flu season is hitting hard right now and we don't want too many people visiting her. It would be terrible if she caught something else on top of everything.
Everyone is different. Some people bounce back instantly, while others just need a little more time. You even mentioned how things have gotten a bit complicated regarding surgeries. Just give her a few more days. Plus, this crazy weather definitely plays a role in how someone feels.
I saw earlier that she’s taking Advil 100 for circulation. There's actually a better alternative—Aspirin Protect—which is much easier on the stomach than regular Advil. Maybe ask the doctor if that might be a better fit for her.

It was actually local anesthesia, so I don't think they had to intubate her there. Her throat seems fine, too; her primary care physician stopped by the house to check on her, and she doesn't look inflamed at all.

The notes said she needs to take Advil, but I made sure to mention she’s allergic to it. She’s taking Pigrel instead; they gave her that as a substitute she can safely use.

I know she's dealing with low blood pressure and feeling weak, but honestly, it feels like this has been dragging on forever. We were all so stressed out before because of those dizzy spells and the fear of something neurological, so we still haven't fully relaxed or started viewing them as just "normal" dizziness. 😢

And she’s struggling with depression now, too. At this point, I’m running out of ways to reassure her and convince her that everything is going to be okay. 😢

Hey, it's me again. 🙂

So, the surgery happened about 10 days ago. They actually scheduled it just seven days after she finally cleared her last medical clearance—and let me tell you, getting all those tests approved took nearly a whole year! Huge shoutout to the team at Mayo Clinic for getting that sorted. 🙂

Things got a little messy during the procedure, but thankfully everything turned out okay in the end. She’s got movement back in her hands and feet, and she's fully conscious.

I have a quick question if anyone here knows someone who specializes in recovery after this kind of surgery.

Basically, she still can't speak normally. Her voice is super raspy, and she starts coughing whenever she strains herself. It's tough because everyone else I saw seemed to be talking fine by day two or three after their procedure! Right now, she's just sitting at home being quiet, but she isn't exactly a silent person by nature, so she's starting to feel pretty depressed.

On top of that, she’s dealing with intense dizziness and just looks really rough.

We're trying to get an earlier appointment with the doctor because they told us the dizziness and speech issues should have passed within a couple of days. If anyone has any insight, I would be so grateful for some info.

It just feels like such a weird recovery process. I’ve seen plenty of other people on that same ward go through this, and none of them looked like this. 😢