Hey everyone. I’m hanging in there; I actually made it to the movie theater today. I think I might have gained a pound, though. Honestly, I don't know—I'm stuck in this headspace where I'm not afraid of anything, but I'm not really hoping for anything either. I’ve been getting IV treatments at the outpatient clinic, but truthfully, I’m starting to wonder if anything even helps anymore. I even told my doctor that it feels like there's nothing left to do. She gave me a terrifying diagnosis—some of the most aggressive type of MS—though part of me thinks she might be overreacting. Then again, if what she wrote in the charts is true, I wouldn't be around much longer anyway. For now, I'm stable, but walking is a struggle. I’m dealing with intense spasms and this tingling in my legs that feels like someone is literally slicing through them.
What can I say? I just miss being alive. I want to go back to work, finish my degree, drive, run... hm... right now, those things feel like nothing more than dreams. But I suppose anything is possible... hopefully.
Carol Barrett2, I assume you’re following a specific therapy plan, since Apaurin is really just a temporary fix. I’m not sure what happens in the next few months during my rehab, but until then, I’ll be stuck back on IV drips again. It honestly feels like my life is slowly slipping away. I’m feeling pretty down today. I just don't have the willpower for much of anything lately. Part of it is this chronic fatigue that never lets up—it's basically a free gift that comes with this illness. Just constant exhaustion; everything feels like an uphill battle... The progress is so incremental, and most of the time it feels like we're just sliding backward, which leads to that total sense of helplessness. Today is just one of those rough days, I guess...
When Oliver passed away, I remember his songs playing on the ward. It was around that time I found out I had MS, though honestly, who knows how long I’d actually been living with it. That moment changed everything for me.
I remember this elderly woman coming up to me once, complaining about some young guy she saw in the restroom. She said he didn't even bother to close the door or anything, and her mother was right there with him—she just kept going on about how rude and disrespectful people are these days. I told her, "Don't judge someone you don't know."
Later, she came back into the room and said, "You were right. That boy has a brain tumor; he's dying."
And so... yeah. That was me, bathing in that restroom with the doors wide open while her mother was right there. Even though I wasn't dying, I understood why. You can't always close those doors because you never know when you might lose your balance and need someone to help you get dressed.
Sometimes I wonder if my life would have taken a different path if I had never known what I was dealing with. I really don't know. I'm just waiting to see if I've finally beaten the tumor. After that, I'll still have the MS to deal with. I'll just have to figure out how to adjust my life so this condition doesn't hold me back.
You all certainly went on a bit here, venting quite a few emotions and opinions. First off, there was some clear downplaying of schizophrenia. Unfortunately, it’s a heavy diagnosis. Anyone who has dealt with it—whether through psychosis or any other way—and continues to live their life, deserves nothing but respect. It’s difficult, and medical intervention is necessary, usually involving medication and therapy. Seeking help from a mental health facility doesn't mean you've "given up." It’s just like if someone gets appendicitis and ends up in the gastrointestinal ward. You go to a different department because that's where the specialists are.
People who haven't faced serious illnesses often lecture others about diet, exercise, and lifestyle, implying that people "imagine" their symptoms or that they could have avoided this by being healthier. That kind of talk comes purely from ignorance and a lack of understanding.
While a healthy lifestyle helps a healthy person—and can be even more beneficial for someone who is ill—it isn't a cure, nor is it anything close to it. These are superstitions, and frankly, they're things I hear far too often that really irritate me.
I once had a girl try to sell me some nonsense, saying, "You know, you got sick because of stress; you shouldn't have let yourself get so stressed out." I mean, seriously... people need to watch what they say. We all live under stress. Whether that stress acts as a trigger for someone's underlying genetic predisposition is something no one can truly know. Even the most laid-back people can develop a tumor and pass away.
I've listened to so much of that foolishness—people claiming it's all your fault for having schizophrenia because you were stressed or didn't exercise enough. It's pathetic. You're dealing with an actual illness, and then you're blamed for being sick based on these superstitious lies. I almost want those people to get sick themselves, just so I can tell them, "It's just the stress."
Sometimes I look at myself and feel proud of how well I’m holding up. But then I stop, look around, and wonder where I would be if I weren't going through all of this right now. That's when it hits me—I'm actually crying on the inside. Even though I try to cherish every single moment and make the most of every day. I am just counting down the days until those lab results come back, so I can finally put all of this behind me. They say life tests you to see how much you can carry... well, I don't know anymore. I'm just waiting to see what's next. If things don't improve, I honestly don't think I have any strength left to carry this burden. I'm feeling pretty low today. A friend told me I'd be a perfect ten if I wasn't sick. It was so disheartening; it’s like he thinks my value is tied to being healthy, or like he can't even wrap his head around someone living with an illness. Thinking about it that way makes me realize I'll probably never find a boyfriend. Every time I actually like someone, I pull away immediately because I know they wouldn't want to be with me if they knew I likely had MS.
True, there isn't even definitive proof that chemotherapy actually works consistently. Sometimes it does, but even the doctors don't fully grasp why or how. The principle seems to be destroying infected cells—cells hijacked by cancer. The issue arises if the treatment is too aggressive; it can wreck your entire system, making it impossible for the body to function. Maybe those newer "smart" drugs will change things, but even then, we have questions about their mechanism.
It wasn't any psychiatric medication I took in the past that caused this; I haven't touched those in years. Plus, I recently went through a blood cleansing procedure. So, regarding my blood levels, those meds couldn't have caused these specific consequences. I'm not sure; I need to contact my hematology clinic to figure out what's going on.
As for chemo... look, if it saves someone, fine. But the problem is if you view cancer like a virus. There’s a chance that even after chemo kills it, the spread continues relentlessly. It feels like fighting a losing battle. I lost a close family member to this exact thing.
I haven't mentioned this yet, but I had surgery to remove a tumor four months ago. I have the pathology report, and it doesn't look good. I honestly don't know if they got all of it. I'll know for sure in a few months. If it's a disaster, well, I'll just have to deal with it... I could go to a private specialist right now to get checked, but I'm too scared, so I'm waiting for my scheduled follow-up at the hospital. Once that happens, I'll know the outcome. I'll know whether I'm finally free of the tumor or not, and what my next move has to be.
Does anyone know anything about leukopenia? I’ve suddenly ended up with a low eosinophil count for reasons I can't quite wrap my head around. Just got my bloodwork back and... well, here we are.
Sorry if this is getting a bit long-winded. I still have more to get off my chest.
I was in the ER today and turned down staying overnight; I’m just feeling terrible. My mobility is so poor right now that I can barely manage on my own. I've arranged to go through outpatient care instead, where they’ll likely pump me full of Solu-Medrol—just a few thousand milligrams of pure poison—to hopefully get me feeling slightly better for a moment.
Honestly, I'm exhausted, angry, and sad all at once. It’s starting to feel like no matter how hard I fight, I’m headed straight for a wheelchair. That realization is what really hits me hard. I want to walk, but clearly, that’s asking too much right now. It’s so depressing—being this young and yet feeling so close to being confined to a chair. They need to take measurements for them, but I keep stalling because I feel as helpless as someone waiting for a funeral arrangement.
As much as Google is great for searching symptoms, it’s just as dangerous because it often leads us down the wrong path by immediately jumping to the worst-case scenarios.
That said, I am a firm believer in prioritizing health—both mental and physical. If you ever feel like a doctor is missing something, you should absolutely seek a second opinion and be persistent about it.
I’m actually a living example of this. I was handed a laundry list of psychiatric diagnoses, all the way up to schizophrenia, and they even committed me to a mental health facility. During one session, I told my psychiatrist that I felt we needed to run some physical tests too. Naturally, she brushed me off, so I just waved her away and listened. Eventually, I just snapped and walked out. I realized my "psychiatric" issues were being caused by something else entirely... something indescribable. For instance, I know what it feels like to be anxious or depressed, but this was nothing like that. The important thing is that they were trying to label me as crazy. Sure, I deal with depressive episodes and have had panic attacks before, but this was a completely different sensation.
It turns out there were lesions on my brain. Now, they interfere with my cognition and emotions, and I can tell exactly when they are causing issues versus when it's just external stress.
I have rehabilitation scheduled at a medical center in Springfield. They’re going to put me through various exercises and treatments; honestly, I'm not even sure I want to go. But I will.
Hey everyone... thanks for the support. It really means a lot. I’m honestly impressed by how you all handled the criticism. Most people would have lost their cool and started an argument, but you didn't. It just shows how much maturity there is here.
Looking back, we’ve all grown up quite a bit and become better versions of ourselves. I can see it clearly. I think this forum has played at least a small part in that growth, even if it's just 3%.
As for me... well, I was in the ER. I went in on Saturday, and now the real fight begins again: seeing who comes out on top, the illness or me. A wheelchair versus taking steps... Yesterday, while I was struggling just to make it to the bathroom, nostalgia hit me hard. I started crying, imagining what my life will look like in a wheelchair. The more I dwelled on it, the more depressed and aware I became that I likely won't be able to avoid it. And you know what else I realized? I haven't accepted my diagnosis yet, and that’s where the real struggle lies. My family is suffering deeply because of my condition, too. As time goes on, the progression gets worse and the good days get fewer. Every time a glimmer of hope appears, it dies out far too quickly.
I’ve decided to start rehabilitation, look into the latest medications, and do everything in my power to stay okay. I'm going into this fight, and once I've given it my all, I'll seek out psychotherapy to keep moving forward. The day I realize there's no point in fighting is the day I'll give up, but until then, I still have time.
To be honest, things haven't been going great for me lately either. I'm currently struggling with a relapse regarding my medication—I’m terrified of the side effects and constantly worried they won't even work. It’s making it impossible to stay productive or achieve anything I set my mind to, which just feeds back into this mild depression. It’s a vicious cycle, and right now, I can't see a way out. Sometimes, getting a perspective from someone else can really help.
I truly don't know how to win or even how to fight when it feels like the battle was lost before it even started. I'm just stuck in this loop.
If you want my honest opinion. Carol Barrett2, you aren't exactly hitting the mark here. You’re overhyping certain films and projects, and honestly, it feels like you're doing it because you're starving for validation or feeling like you haven't achieved enough. You're drifting a bit far from reality. My advice? Spend some more time with your family or someone close who has known you forever. Everyone loves you, you're clearly a good person, and there's really no reason to chase what you're chasing. Just accept yourself and be content. Find other ways to stay busy; obsessing over this isn't great for your mental health—it pulls you further from reality. You seem to think that by elevating yourself, you won't be vulnerable or that you'll somehow stand above everyone else. But you know what's truly in your heart and why you feel this need. Think about that; it might actually help you feel better.
As for Jose Ward4, he’s just been a bit more down lately due to some timing and circumstances he hasn't wanted to disclose. The question is whether he's slipping into depression; clinically speaking, that’s when it lasts longer than three weeks. But from where I'm standing, he seems to have enough strength to fight through it. He's been dealing with this for a year now and is slowly finding his balance again.
Great job, Carol Barrett2, I think you're on the right track 😁
with Trajlo, you are describing a classic psychological profile that applies to almost everyone, at least regarding the person being discussed here. It doesn't take much deep thinking to realize that. The real question is how to actually help that person. And even then, there is always that universal answer where everyone just repeats "psychotherapy, blah blah blah..."—it’s just going in circles.
Isn't it refreshing sometimes to break out of that circle and test the limits? That is what I am doing. I know it might seem crazy, but my curiosity is simply stronger, unfortunately 😢 Also, all these corticosteroids and the other "nonsense" I take for MS are known to frequently cause anxiety, depression, or psychosis as side effects.
So, I voluntarily stopped taking Decortin and one other medication. Now my body has to produce its own cortisol, and that will take time because the adrenal gland has been trained to produce those hormones artificially.
I believe I am in a phase where my body is starting to slowly secrete them naturally. My immune system is gradually strengthening, which means it will soon (I can already feel it) start attacking itself. Since autoimmune diseases like multiple sclerosis and similar conditions are akin to cancer...
What does that imply? That I am waiting for my immunity to strengthen only to destroy itself? Today, I can't even walk without canes; I have very little sensation in my legs and they feel incredibly heavy. I have very little strength left. My vision is getting worse too; the optic nerves are affected, of course, as Kimberly Cooper once explained...
What comes next? The second part of the experiment follows... I can form a hypothesis, but we shall see. Is it possible my body has entered remission and I don't actually need these medications, or am I mistaken?
Another reason I am doing this is that I truly have nothing left to lose. If things go south, I'll undergo plasmapheresis. Does anyone here know what that entails? Or will the next thing happen where my neurologists, dissatisfied with my condition, finally decide to prescribe me some experimental drug or interferon?
Then it becomes a matter of risking a little more to gain a lot... because I know I am currently being treated symptomatically, and that isn't what I want. I want to treat the cause. But that is a challenge, because the underlying cause of demyelination remains unknown or purely speculative.
Kimberly Cooper, you’re a breath of fresh air in here, haha... welcome aboard! Unless, of course, you aren't dealing with any mental health issues yourself?
To be honest, what you typed is quite interesting. I agree with your point, though I wouldn't necessarily reduce it strictly to pure psychodynamics. That said, more recent studies show some deviations from that traditional approach—which I still believe should serve as our foundation—but perhaps we don't need to be quite so rigid about it.
Anyway, briskowl24, you're describing someone who seems unstable, clearly struggling with depression and a few phobias. It doesn't necessarily mean they are experiencing psychosis, but the key is to react promptly. We need to find a way to help them change the circumstances driving this behavior so it doesn't escalate into something much more serious. Clearly, this isn't just a recent development; it's likely been part of their life for years. The real question is: is this just their personality, or are we looking at actual clinical disorders?
For those aiming for success, stop feeding yourself excuses like "I'm broke" or "I can't get my head straight." It is entirely possible... and yes, I’m using the word "looking" ironically here because my eyesight isn't the best either... anyway, the point is, I used to give myself enough "excuses" to ensure I'd never achieve anything. Now, I just feel angry at my past self. I don't make excuses, and I don't indulge in self-pity. My starting point was abysmal. I wasn't wealthy, nor did I have particularly... supportive parents. I grew up surrounded by violence, alcoholism, and all sorts of chaos. In my household—if you can even call it a family—I was treated like an outcast. I actually had to hide just to study, because my folks would throw books at me, claiming I’d go crazy from reading and that it was why my vision was failing. So, despite the obstacles—and believe me, there were far too many to bear—I made it.
While I am saddened because my options are still severely limited due to MS, that doesn't mean I won't find a way to achieve more. I always have, and I always will, no matter how hard it gets.
As for this entire scientific saga by Trump, I actually learned about it back in high school while reading extra literature on the side and finishing music school simultaneously. For instance, when people mention an enzyme, my brain immediately connects it to a molecule and starts calculating how neurotransmitters travel down the axon and... well, I'll stop there. That’s just how my mind works—scientifically. Anything else feels pointless to me.
Even something as simple as picking out a shelf to hang a weight on involves me applying the laws of physics, calculating inertia, checking the wall type, and so on...
That’s when my "crazy" mind takes over, and honestly, nobody can keep up with it—not even me. For example, at fifteen, I could spend an entire night studying a complex book on quantum mechanics, while my peers were busy studying the bottom of a bottle during a night out.
Different. I've always been different. People like us have a hard time fitting in, as you probably know. That often leads to loneliness, and if you're unlucky like me, you end up facing the exact illness you fear most—the one that attacks your brain. Hallelujah... what can I say? Maybe I should go dig up that bottle those fifteen-year-olds were draining. Maybe they found their answers at the bottom. Bazinga, hah. Life is interesting; I always knew I’d spend mine trying to make sense of it.
Who else reads 750 pages of scientific literature and actually enjoys it? There's no helping it... heh... but I love who I am. People, please love yourselves, even when you're weak. Forgive yourselves, stand up, and move forward. Don't make the same mistake twice. Life is too short.
Going to school, studying at a university, and finishing my Master's in research physics—none of that has anything to do with having a disability. No one is stopping you, now or later, from pursuing training or whatever else you want to do.
In fact, during my evaluation, the doctor told me she was proud of me for having such big ambitions. She believes I can pull it off, even though she understands how difficult it will be given my condition.
Anyway, just so everyone knows, you can work and still receive disability benefits. You can have a paycheck and your benefits at the same time.
The doctor even mentioned during the assessment how much she admires what I’ve already achieved academically. She said she hopes to support me and really doesn't want to see someone like me leave the country later on. It’s in their best interest to keep young, highly qualified people around; the government functions much better that way.
Look, I tell everyone—especially those struggling every day and fighting through it—that if you qualify for any kind of assistance, take it. Use it to improve your quality of life.
I’m really glad to see so many good people here, which is why I keep stopping by.
Carol Barrett2, I am truly sorry to have to tell you this, but it sounds like you are dealing with a serious mental health disorder or even a chronic illness. I really hope you pull through. Please don't fight the process—just listen to your doctors. It’s also about hypochondria, honestly. I feel for you... I’ve seen cases like this before because a close friend of mine was just as convinced as you are, and I ended up taking her for extensive medical checkups. She kept acting like she knew better than everyone else, Googling everything like she was some kind of doctor. Look, doctors make mistakes, sure, but they didn't spend years in med school and complete their residencies just so anyone could look up symptoms online and play specialist.
Diagnosis is complicated, and it often leads to wrong conclusions in the beginning, but you can't give up. Take it from me—I'm telling this to someone who was diagnosed with paranoid Schizophrenia, even though my brain scans show actual physical gaps...
What can I say? They make mistakes, and they aren't always great at communicating a diagnosis. It's true. And honestly, most of the time, we hate them for it.
But you know, we still need them. Your liver isn't failing or anything extreme; I have liver damage myself, which is actually quite common. I don't even know what her specific physical diagnosis is, but it doesn't matter if you understand what I mean—the obsession with it is what makes you a hypochondriac. You don't need that. You can do better. Being undernourished is nothing major; I've been there, and plenty of people deal with it. It will pass... In America, the healthcare system might struggle to provide the integrated support you need to address both your mental and physical health simultaneously. If you don't mind me asking, Carol Barrett2, how old are you?
Hi everyone, first off, thank you all for those supportive messages.
Basically, I had this feeling that something was wrong with me. Since I’ve always insisted that everything was just "psychological," I tried to tackle the issue through mental health channels. However, despite various medications, diagnoses, and even stays in psychiatric facilities, the problem wouldn't budge. It turns out, I don't have a mental illness.
I actually have brain lesions; I am a neurological patient. I am living with Multiple Sclerosis. It's a progressive disease where lesions spread through the brain, and as they affect specific areas, they cause physical disabilities as well as cognitive and emotional shifts.
My vision is most affected, so my sight is impaired, and my legs are also impacted, making it difficult to walk for long periods. Further progression usually leads to more significant disability. I won't even list the other symptoms—to put it mildly, they are quite unpleasant and I wouldn't wish them on anyone.
All in all, what doesn't kill you makes you stronger. I am a stronger person today because of it. My main struggle over the last few months has been depression stemming from the uncertainty of tomorrow. Will I be able to walk at night? Questions like that weigh on me.
Many people just don't get it, which can be really isolating.
By nature, I am a scientist. I have ambitions that others might find hard to grasp, specifically my goal to earn a PhD in quantum physics. These aren't just pipe dreams; I am currently in my final year of a science program and maintaining a 4.0 GPA. Ever since this diagnosis, I've been on medical leave.
I am currently trying to find ways to get back on track. For now, I am living on disability benefits and rental income from an apartment. Naturally, I have much higher aspirations for my future.
Harold Anderson3, please, everyone, just speak your mind. Even if it sounds like "complaining"—which isn't how I see it—it’s fine. If someone needs to vent, they should. To me, this is just part of living with an illness. There are highs and lows, and being able to talk or write about them is essential. We all go through rough patches sometimes, and we all deal with certain limitations. That's why we're here for one another.
Are you feeling any better, Harold Anderson3? Were those pills making you too drowsy when you were already exhausted? It all feels very familiar to me because I've spent a lot of time navigating similar circles.
I'm not as mentally stable as I would like to be. But I know why. One reason is that I'm traumatized by the diagnosis itself and everything I've endured—the spinal taps, the multiple hospital stays, spending more time in a hospital ward than at home, things like that. Back then, I didn't even know if I'd ever walk again; I just couldn't feel it. And I spent a long time in a wheelchair... Then, suddenly, it all hit me. It was like a nasty kind of PTSD, and I think I'm still fighting it today. Even tonight, while I'm in remission, that fear can be so intense... it's hard to put into words.
I've talked to others living with MS and with my neurologist, and I learned that depression and emotional instability are actual symptoms of the disease.
Overall, I'm handling everything well, but tonight is just one of those heavy evenings.
Thank you all for the replies. I always enjoy stopping by here to see how everyone is holding up; I truly believe in this community and know that, despite the uphill battle, you can all achieve a much better quality of life. For me, every single day is a struggle too.