Posts by copperpilot11

Drew Jones26 said:feeling any better at all?
did you end up seeing that neurologist?
really hope things are looking up for you 😉
hit me up later

Yeah, saw the neurologist. Got referrals for an EEG, CT, Doppler, and VEP. Already finished the VEP, so I've just got those three left.

Saw my specialist for the thrombocytopenia today, too. Had to stop taking Decortin 20 because the side effects were brutal, and besides, they’re saying that was just a temporary fix anyway. Now they're suggesting I just get my spleen removed... a perfectly healthy organ. Of course, I said no. They're giving me a 50/50 shot at everything being fine after surgery. Not exactly a winning bet, especially if I have to spend the rest of my life on meds just to make up for a missing spleen.

Got it... just finally today.

So, I did a full ENT checkup last week, but didn't get the actual results until this morning. Doesn't really change much though—my doctor already gave me her "off the record" take that everything looks fine...

But they did flag something else, something a bit more serious than I expected. It's autoimmune thrombocytopenia. There’s no cure because it’s an internal issue. My bone marrow makes enough platelets, but then my own immune system just starts killing them off.
I'm still on corticosteroids for now, though I'm tapering down starting today. They want to get me off them soon since my count hit 108, which is pretty close to where it needs to be.

The catch is, since there's no cure, they're telling me I have to manage this for life, doing blood work at least once a month. That's a hard pass for me. Not for my whole life. Honestly, I've lived with low platelets for God knows how long without knowing, so I'm not about to overhaul my entire lifestyle now.

As for the dizziness, it's still there, just less intense. Probably isn't even the platelets—more likely from ramping up physical activity. It's led me to think it's all in my cervical spine, maybe restricted blood flow to the brain. That would explain the spinning and the issues when moving from light to dark. On top of that, I've got these sharp pains in my lower back and some stinging sensations in my neck.
I've tried scheduling an appointment with an orthopedist three times now, but after a quick chat and a surface-level exam at the clinic in Boston, I'm still stuck. Now I need full X-rays of my neck and spine.
Plus, I have a neurology appointment on April 30th to hopefully rule out anything with my brain. Everything else seems to be checking out okay. 🤷

redharbor23 said:That’s good to hear, but take it slow. If you approach things with a bit more composure, you’ll find they start looking better.
Don't let this scare you 😉 it isn't a reflection on you. I spend a lot of time reading and writing in forums dedicated to malignant diseases, and those people are going through hell. But if you could just see what sheer willpower can actually accomplish 🙏 🙏 I've seen it firsthand. Just take it one step at a time, stay calm, try to minimize your stress levels, and get outside into the fresh air as much as possible. 😁
Keep us posted. 👍

I know... And I'm not trying to downplay anyone else's issues. I know people who were diagnosed with all sorts of tumors, some even passed away. It's just... everything hit me at once, all these problems piling up without any answers. I'm still a bit worked up, which is why I'm pushing for the neurologist. If the results come back clean, I'll finally be able to relax (as weird as that sounds).

And yeah—I'll keep you guys updated. I have a full ENT appointment this Monday. Everything from my balance (which is still shot) to hearing tests.
On Wednesday, I've got an orthopedist checking if these dizzy spells are coming from my neck, and then on the 7th, I'm heading in for blood work to check my platelets. Honestly, a break from the needles would be nice; my upper arms are covered in bruises and little holes. Even the lady at the lab gave me a sympathetic look today when I showed her my arms.
On top of all that, I still need to schedule the neurologist... Yeah, having a blast.

redharbor23 said:I’m no medical expert, but here is some practical advice: you need to calm down immediately—and I mean right now. You aren't helping anyone by staying this worked up; you're just causing yourself extra harm through pure anxiety. I know it’s easier said than done, especially if you have a tendency to panic—trust me, I’m the same way—but you HAVE to control it. Regardless of what the diagnosis ends up being, whether it's serious or minor, managing your stress is the first step toward recovery.
Your current lifestyle, the lack of routine, and this constant stress are only making things worse. You need to get your act together: eat regular meals, get enough sleep, and start looking after yourself. You’re far too young to be living like this; protect your mental health now while you still can. 👍

Haha, true enough. 🤣
So, I went in for my checkup today, and I finally have some decent news. In just two days, after taking five corticosteroid pills, my platelet count actually doubled. Went from 18 to 60 between Wednesday and today. Small wins, I guess.
They told me I'm still on the meds for now. I've got another follow-up scheduled for July 4th to figure out the next steps. To be fair, things are looking up—the morning dizziness is finally gone. I barely feel any spinning while the pills are active, either. Well, "barely" is the keyword. I still get hit with a wave of lightheadedness here and there, especially if I get worked up or if I'm just plain exhausted. Lately, I've been waking up around 7 AM every day, mostly just from the stress of all these tests and doctor visits.

Drew Jones26 said:Jumping in here because I've definitely been there and I'm still dealing with it. No idea why, honestly. Who knows. I've seen neurologists (still waiting on an MRI), went to the ENT multiple times for all those tests, saw a physiatrist... and it turns out it might just be some labyrinth damage from an untreated infection, but I guess I won't know for sure until the MRI results come back...🤷
Good luck 😉
I really think everything is going to turn out fine for you too. 😉

Thanks... Fingers crossed it's nothing major 🙂

Brandon Newman95 said:Look, from my own experience, you can bounce from doctor to doctor until you're blue in the face and still have absolutely nobody pinpoint the root cause—you’ll just end up stuck with a psychiatrist's label. It’s all been done before. Take me last year, for instance; it was a total mess. One day I felt okay, the next I was spiraling. I even had two different autoimmune issues flare up on me out of nowhere, and I was losing weight like crazy just from the sheer stress of it all. You'll just keep getting tossed around from specialist to specialist, and most likely, they'll just slap an anxiety and depression diagnosis on you. And honestly? You should probably consider if there wasn't some massive stressful event lurking in the background that set the whole thing in motion first.

Hmm... Yeah, I'm pretty much living under constant stress right now. Was supposed to take a trip to the US, but couldn't swing the cash. Constant fighting with friends too, which isn't even on me. Probably moving soon, and on top of everything, my symptoms feel like something heavy and permanent. Some of my family members are dealing with serious stuff lately, too, though their diagnoses are treatable. So, it's possible... if the MRI or the specialist appointment this Monday doesn't turn up anything, I might have to face the fact that it's psychological. They already gave me a referral for a psychiatrist.

placidorca16 said:I dealt with these crazy dizzy spells—all thanks to my neck, apparently. I’ve had headaches my entire life, too. At first, I was convinced it was something serious with my brain, so I went through the whole neurological gauntlet and got an MRI, but everything came back perfectly normal. While I was waiting on all that, I decided to try acupuncture with a specialist—did 11 sessions total, and honestly? It cut the dizziness down by about 95%. Even my physical therapist confirmed that acupuncture was a solid move for this kind of thing, and then they sent me off to do some medical exercises to "maintain my spine" long-term. Those have been a lifesaver, too. The dizziness is mostly gone now, though I still get this occasional "foggy" feeling in my head—but that clears up as soon as I start my exercises.🙂

By the way, losing weight could totally be a side effect of the stress from dealing with all this. That uncertainty while you're waiting for a diagnosis is easily the worst part.

Thanks for the heads up. Got my neurology referral today, and I'm heading in tomorrow to see how the steroid treatment is working.
On Monday, I've got an ENT appointment for a full balance system check—middle ear stuff, etc. Honestly, I probably won't sleep easy until I'm 100% sure there isn't something serious going on in my head.

By the way, placidorca16, do you ever struggle with balance when it's dark or in low light?
When I say balance issues, I mean actual vertigo and being unable to stand on one leg, which is pretty much the standard balance test...

mistygull21 said:Are you still dealing with those dizzy spells?

Yeah, I am. It isn't constant anymore, but it hits me whenever I push myself physically, get exhausted, or even just when the lighting shifts from sun to shade.

Between the dizziness and the weight loss, this is the one thing keeping me up at night. My doctor is playing both sides—saying it could be serious or it might be nothing. We've run basically every test under the sun except for my brain and heart. Everything looks fine on paper, aside from my platelet count. So, now I'm waiting on a referral to a neurologist for an MRI or a CT scan.
I also got sent to a psychiatrist. Apparently, they think I'm just being dramatic. (I was visibly shaken, actually trembling).
It’s hard not to spiral when you have no idea what’s going on or if you're running out of time. Dropping 26 pounds in six months while feeling like the room is spinning doesn't exactly feel like a minor issue.

Another update...

Got my blood work back today. Get this—my platelet count is down to 18. I also had an abdominal ultrasound done, which luckily showed everything looks normal there...

The doctors put me on emergency steroid treatment, but they're still just guessing why my platelets are tanking. They suspect some kind of autoimmune issue, but I won't have the actual test results back for another three weeks.🤷

Alright folks, quick update...

Thyroid looks fine, and bone marrow came back clean too. Thank god, at least there's nothing scary happening there. But, just like the doctors suspected, my body is basically attacking its own platelets. It wouldn't be all that weird if it weren't specifically something you usually see in kids.

Nobody actually knows what's going on with me, and meanwhile, my platelet count jumped back up to 88 (it was down at 25).
I’ve got more blood work tomorrow morning just to make sure that "25" reading wasn't some fluke. Aside from that one brilliant move, nobody has any real answers.

The whole thing is just exhausting. First, I was spiraling thinking it was a tumor, then leukemia, then thyroid issues... now I don't even know anymore. I just want this to be over.
Oh, and on top of everything else, I dropped another pound. I'm sitting at 63.8 or 63.9 now, when just a week and a half ago I was at 64.8 or 65.0.

I'm still worried about other stuff, though. Read somewhere that tumors or other serious illnesses can sometimes hide from blood tests... I really hope I'm wrong.

Sarah Johnson11 said:Well, if they just did a needle aspiration, you're probably looking at about seven days—but if they performed a full biopsy, it could easily take even longer than that.

Well, figures. Guess I’ll just sit here and try not to lose my mind while I wait. Thanks for the heads up. 🙂

Quick question... how long does a bone marrow biopsy actually take?
Talked to a buddy today who went through the same thing, and he’s swearing it could take up to a week to get the results back.

Still haven't heard anything on my end, so I figured I'd ask...

Still nothing, unfortunately. Looks like I won't be finding out the results until tomorrow after all... Thanks for checking in, 🙂

Sarah Johnson11 said:It could be idiopathic thrombocytopenia, which they usually treat with Pronison. And just for the sake of clarity, Pronison is a synthetic glucocorticoid—basically a lab-made version of the hormones your adrenal glands produce naturally.
If that doesn't do the trick, doctors might look into removing the spleen, or there's the possibility of needing a few platelet transfusions.
In the end, a bone marrow biopsy will tell you exactly what's going on under the hood.
Look, it’s not the catastrophe it feels like. First things first: try to stay calm and wait for the actual diagnosis.
Treating it with Pronison for a few months can be incredibly effective and yield amazing results, so please, don't go thinking your days are numbered—not by a long shot.
Hematological issues are very manageable these days, believe me.
Have you had your coagulation tests done yet? Like, what’s your fibrinogen level looking like?

I'm more worried about the big picture right now, but thanks...
I did a general blood panel two weeks ago, then went back yesterday for a full hematology workup and a urinalysis. My doctor basically told me everything looks fine except for my platelets. That covers the clotting tests too. Honestly, I haven't even noticed any issues with cuts not healing or anything bleeding weirdly.

Should have the final results by late afternoon today. I'll post them when I get them.

Brian Patel4 said:Drew Jones26, just so we're clear, thrombocytopenia simply means a low platelet count. It’s a clinical finding, not an actual diagnosis of what's causing the issue.

Robert Jones6, I'm still waiting on you to post those CBC results: :držifigedabudesveok:

Yeah, I get that... Just having thrombocytopenia isn't the end of the world, unless you cut yourself or start bleeding internally. I read somewhere you could technically live with zero platelets... obviously, that's a nightmare scenario if you trip and fall.

BUT, the real question is what's actually triggering it, and if that underlying cause is dangerous.
Funny enough, I've had a few times where veins in my arms or legs just burst—separate incidents—just from bumping my leg too hard or scraping my arm. Bruises popped up on my forearm, my right leg below the knee, and even my foot. Just blue marks that lasted a week or two before turning yellow and fading.
That was a long time ago, way before the dizziness and headaches started, but it's also a classic symptom. Guess I've been dealing with this longer than I realized.
Mind you, the little holes from blood draws heal fast with almost no bleeding. It's confusing. Looking at the whole picture, it feels like my platelets are just playing games. They drop low, then they bounce back.

Drew Jones26 said:hm... looks like you're dealing with thrombocytopenia... did you get a bone marrow biopsy done yet? or did some specialist send you over to an immunologist?

Yeah, it's thrombocytopenia. Had the bone marrow biopsy done today. Just waiting on the results now. No, haven't seen an immunologist yet.

Between the dizziness and the weight loss, I can't shake the feeling this is bad news. Honestly, I'm starting to freak out—haven't slept a wink. To top it all off, the stress is killing me. I feel like I'm hitting a breaking point.

Did my cytology, ENT stuff, and some other tests—can't even remember everything I had done...
Everything looks fine, EXCEPT for one terrifying thing... My platelet count dropped to about 25. It was at 90 just two weeks ago, so now I'm sitting here wondering what the hell is happening and if I'm running out of time. 😢 I've got a bone marrow biopsy scheduled for tomorrow. I'll let you guys know how it goes...

Thanks for all the advice and well wishes. Until I get the actual results back from the hematologist, there isn't much else I can say...

As for the panic attacks and caffeine issues, things weren't really this bad until about six months ago. I used to be able to knock back two cups of coffee a day without a second thought. Then the vein twitching started, followed by these sharp pains around my heart. I cut out the coffee, and those symptoms actually cleared up. If they hadn't, I would've been at the doctor's office a long time ago. 😢

Anyway, I'll post what the hematologist and the thyroid specialist say once I know. We won't be able to talk specifics regarding a diagnosis until then.

Robert Jones6 said:Look, I'll jump in here for a second 🙂
I dealt with something pretty similar about 10 or 15 days ago. My head was spinning so bad I actually got scared—legit terrified. It happened every single day for a few days straight, regardless of what I was doing or where I was. Here’s the thing: I just graduated college, I'm job hunting, and I spend most of my time stuck at home. I don't get out much. When I'm not online, I'm just gaming, and aside from basic chores, I'm basically sedentary all week. Then this started happening—my hands and legs would go numb if I stayed in one position too long, which had never happened before. So, I started working out almost every day—slowly, obviously, because if I overdo it and get too sore, I'll just quit. I feel great now, but I remember having terrible dizzy spells a couple of years ago back in the spring—though I just chalked that up to "seasonal fatigue." It’s still too early for that though; that won't hit for another month or two. And when it does, I'll know why, so I won't panic.
Also, yeah, I get the chills constantly too—mostly because I've been glued to my computer all day lately.
If I had the cash, I'd join a gym, but instead, I have to force myself to work out at home. I hope you start moving more soon—you aren't going to feel better otherwise. Good luck 👋

If this really is just seasonal fatigue, I'll try to get active... Thanks for the tip. 🙂

To answer yesterday's question: No, I didn't donate blood. Which actually makes this messier. I haven't even had blood work done in six years. No reason to. And since there hasn't been any major injury or bleeding, I'm left wondering how I ended up with thrombocytopenia. Unless something is leaking internally, which I really don't want to think about.
Heading to the hematologist on Monday for more tests, then we'll see...

And honestly? The more I think about it, the more the thyroid looks like the culprit. Panic attacks, cold extremities, depression (which I've dealt with for years), irritability, vertigo, and those vein pains after coffee or caffeine. Most of this has been hanging around for months, maybe years. Plus, I have an arrhythmia.
That would also explain why some days are fine and others are total garbage. For instance, yesterday was actually okay, mostly just occasional dizziness... I'd give it a 4 out of 5. Today, I'm right back where I started, dizzy and feeling heavy-headed.

Brian Patel4 said:I’m glad to see you’re feeling a bit calmer; personally, I don't think you have any reason to panic.
Try to use logic as much as possible and stop fixating on your symptoms—I know that’s easier said than done, but give it a shot 🙂 . You’ve probably noticed yourself that the more you dwell on the dizziness, the more you notice it and the worse you feel, right?

First off, you don't have the symptoms of a brain tumor. While those symptoms *can* be present in brain tumor cases, there are much more significant indicators that would raise suspicion. For instance, neurological deficits, intense headaches accompanied by projectile vomiting, or even seizures. You aren't experiencing those! So, feel free to let that idea go.
As Sarah Johnson11 mentioned, searching for a diagnosis on Google is a huge mistake. Looking it up on a forum is slightly less wrong 😁 , but seeing a real doctor in person is the best way, which is exactly what you did. You're on the right track.

Now, as for me 😁
At first glance, the dizziness, loss of balance, and ringing in the ears reminded me of Meniere's disease. However, you didn't mention hearing loss, nausea, or nystagmus (involuntary eye movements), and even those are quite rare; so let's consider other possibilities.

Enlarged tonsils can block the opening of the Eustachian tube, which acts as a channel to equalize pressure between the middle ear and the throat. When that happens, negative pressure builds up in the middle ear, causing serous fluid to leak in.
From the outside, the eardrum looks opaque or grayish, and sometimes you can even see a fluid level behind it. This leads to a type of inflammation that, unlike a purulent infection, often isn't very painful and doesn't necessarily cause deafness, but rather a sensation of fullness in the ear.
This happens more frequently in children due to larger tonsils, not so much in adults, but you are still quite young and you mentioned your tonsils are large—so this is definitely a possibility. As you likely know, the balance mechanism is located in the inner ear, so it's possible the inflammation affected that as well and caused the vertigo. That's just a theory... but without an ENT exam, you won't know for sure. I suggest asking your doctor for a referral to an otolaryngologist. If you're in a major city, heading to a place like the Mayo Clinic or a local university hospital would be a solid choice.

The thyroid. Did your doctor palpate your neck to check if it's enlarged? Are you experiencing a rapid heart rate, increased metabolism, warm/sweaty skin, or feeling unusually nervous and irritable? If so, get your thyroid hormone levels checked via blood work. Maybe you already have a referral for that?
If the thyroid is indeed the cause of the weight loss, it can usually be managed quite well with medication.
But it seems to me that you aren't eating quite enough, are you? Your urine is giving you away 😁 because acetone appearing in urine occurs during starvation (whether intentional or due to cellular starvation in diabetes). And no, you don't have diabetes. Seriously, you don't!

Bloodwork. Don't worry too much about the erythrocyte count, RDW, or toxic granules. Nothing there is significantly out of range. However, the low platelets, combined with those macrothrombocytes and the elevated MPV, suggest some kind of recent bleeding. Have you had any injuries, or perhaps donated blood...? Hmm, but then the erythrocytes would be lower too. It's a tricky one. Did you perhaps donate plasma? 😉
I really don't have a definitive idea here, so it's good that you're seeing a hematologist to clear things up. Definitely let us know what they say!

If I may suggest, I'd recommend spending as much time outdoors as possible—you mentioned yourself that you feel better outside—and try to adjust your schedule regarding screen time, sleep, wakefulness, and meals. I understand your friends are in different time zones, but your body is on American time, so you might be putting a strain on it, don't you think?

Go ahead and get those exams done, and I hope you'll keep us posted!

And yes, I sign off on everything fadedmarlin402 said. 🙂

Yeah, fair point... The more I dwell on this dizziness, the worse it gets. What exactly do you mean by "neurological episodes"? Lately, I've been blanking out mid-sentence, and I even had two panic attacks in public. (The last one was about two weeks before this whole mess started.) Could be anything, maybe even my thyroid hormones.
And no—no vomiting. Just nauseous from the spinning.

I'm based in Chicago, so if none of these tests turn up anything, I'll move on to an ENT specialist next.

Already have a referral for the thyroid. I'll get blood drawn for both the panel and the thyroid levels at once. But I have to wait at least two weeks so the doctor can see if things are actually trending downward, or if I just had a "bad day" when they first diagnosed my thrombocytopenia.
As for food... I eat, but it's not consistent. Like I said, mostly twice a day, sometimes just once. And when I do eat, I overdo it. I know, I know. My lifestyle is a total wreck. If I can't find the root cause, I might just have to move my computer setup out onto the porch.🙂