Dizziness & headaches

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:

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.

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:

Look, I get that thrombocytopenia isn't a diagnosis itself... but it's pretty obvious there's a reason those platelets tanked from 90 down to 25.
I really hope they figure out what's driving this soon.
Good luck, man, keeping my fingers crossed for those labs. Let us know what they say. 😉

copperpilot11 said: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.

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?

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.

What's going on?

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

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...

copperpilot11 said: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...

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.

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. 🙂

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.

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.🤷

Are you still dealing with those dizzy spells?

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.

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.

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...

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.

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.

copperpilot11 said: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...

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. 😉

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 🙂