The medical system is going to break me, and I need something...

[NeuroSeeker]

So I've spent the last two years crying. I have seen 6 neurologists in the last two years. I've been called a liar and a "googler," though given the quality of care I've gotten so far, you bet your bottom dollar that I'm googling EVERYTHING.

I feel lost and have no hope. Doctors simply do not care about me. I've seen 18 doctors in the last two years (a third of them neurologists) and very little has been accomplished. I have gained a hardcore case of doctor anxiety, and anything medical twists my stomach and chest into knots that are so tight I can't breathe.

I'm ready to give up. I'm totally stuck and am completely hopeless. I dared allow myself a sliver of hope the other day, and it took less than 72 hours for the world (aka doctors) to burn that sliver into so much ash.

So why should I carry on? It hurts to exist. I'm negative. My husband is exhausted. I'm exhausted. I'm so depressed. I think about dying all the time. It's not that I plan to - images of me killing myself just pop into my head all the time. And it's the medical system that's doing it to me.

What is the point of living if there is no hope. Meditation doesn't work, I'm alone and miserable all day, and my husband and I fight about my depression all the time. He wants to make light of it, but it's so freaking heavy - there is nothing light about it. I've had to give up all my soothing activities due to undiagnosed spinal compression that affects my hands and my legs. I walk like a drunken sailor, and my hands are either numb or very painful. I don't even get to sleep in my bed half the time because the Restless Leg Syndrome is steadily getting worse and my husband needs to work in the morning. Since I'm the dead weight around here, I figure he has more right to the bed than I do anyway.

I know this is long. I'm just heartbroken and at the end of my rope. I go to therapy, but it cannot keep up with how awful I feel my life is. I want to die. If I was unmarried I'd be dead tomorrow, but I couldn't do that to my husband, who is, despite my complaint, amazing and deserving of better than me. Society has spoken, and my worth is pretty much nothing, I guess.

I want to die. This life is terrible and I don't want it anymore. I simply don't know how to get treatment that has compassion attached to skill. Apparently, the doctor that provides that is a complete mystery to me.

Every day, all I do is wake and then endure the many hours until I can go to bed.

Sorry this is so long. You're a trooper if you actually read this.

[Survivor1687]

Hello NeuroSeeker... (((hugs)))💜 I'm sorry you're struggling so badly right now, I can relate and sympathize with your frustrations. The healthcare system needs to continually be addressed, until changes occur. It's a constant battle. Please don't give up hope. This place is a supportive community that is here to help you along the way with your struggles. Keep reaching out. I'm glad you did. Your life matters, you matter. Hang in there.

[NeuroSeeker in reply to Survivor1687]

Thanks. I just wish I believed. Doctors are infatuated with their nonsensical "culture," and they don't care. There is no one to complain to.

It's clever, really... I'm too sick to get anything going. I can hardly keep from crying ALL the time, and ny keeping me sick they win.

I've asked for help so many times. They dismiss me each and every time, usually with the "you're lying" vibe. I just don't see it changing.

It's so unfair. Each day my heart is more damaged from all the stress (cortisol), making it more and more likely that I'm going to die like my mom and littlest brother died of (11 months apart) during the lockdown: congestive heart failure. It's an ugly death, and they are driving me toward it.

I don't understand. I'm nice, respectful.... And quit on. They suffer no consequences. Only I do. And my husband.

It's so unjust. I don't know how to handle the pain. I don't know how much longer before I hit a bad moment and write a letter, send a few copies, and end myself.

I can't even eat, I'm so stressed. Haven't eaten in 36 hours. Simply can't.

<<Sigh>>

Can you tell I'm alone most of the time?

[Agora1 in reply to NeuroSeeker]

Hi NeuroSeeker, I'm so sorry for the spot you have been in over these last 2 years withnumerous doctors and yet no conclusion to your everlasting suffering. The fact that you

are belittled and judged is wrong. I'm wondering if by chance, these doctors are all from

the same hospital? I ask because they do tend to stick together by not attacking each other's care of a patient.

I see you are in the United States. Have you ever thought of going to Mayo Clinic or Cleveland Clinic (both are great diagnostic hospitals/doctors. Too many doctors and too many medications is like having too many cooks in the kitchen. You deserve to be treated with respect and dignity by the medical profession.

I'm very sorry to hear about the passing of your mother and brother. My sincere sympathy goes out to you.. I don't think you are lying at all. I believe you are hurting both emotionally and physically and are looking for some comfort and understanding. I hope you get the answers you need so you can have some peace in your life. I care xx

[NeuroSeeker in reply to Agora1]

Thanks. It was at the same hospital. I was in the process of switching, but now I'm confused about what's going on. Trying to go with the flow, because around here any kind of patient push back seems to be met with more than an equal and opposite reaction.

Johns Hopkins is out, since the RLS one only takes Maryland residents and I seriously doubt that I'm even close to the worst of cases.

It's just that my hospital (though professing Faith and Service) allows poor doctor standards and doesn't seem to hold people accountable.

And my hospital is listed in the top 100 or 50 or something. Something is very, very rotten.

That said, going off all (most) meds then taking the train back east is an option. I can't fly with the RLS, and I'm on the opposite coast. Surmountable, but a real pain in the butt.

I wouldn't mind the train ride if I got a sleeper car, though.... I love the train, as long as I get scopolamine patches. 🤚

And thanks for understanding re the pain. It's amazing how personal pain with grief and then all the physical stuff and the rejection..... It's a lot, and I've been slow in healing. Hard to tell what is what....

It's a knot with too many threads and loops.

My husband and I did hospice for little bro, and it was wonderful and terrible and awful and it depleted me. I would not change my decision, but boy... Hindsight slaps really hard!

[b1b1b1 in reply to NeuroSeeker]

Agora's suggestion about the Mayo Clinic or Cleveland Clinic is the best approach. I would just add some of the NYC hospitals, such as Columbia Presbyterian Medical Center or Mount Sinai. I think there are also some very good hospitals in Boston, although I am less familiar with those. I was once sick for about a year with a strange ailment and one doctor told me not to give up seeking help. I didn't and eventually found the doctor who did help and was OK after about 15 months. I would say the same thing to you.

[NeuroSeeker in reply to b1b1b1]

I'm on the compete other coast and can't fly (total misery for hours); I could take the train, but that's about a week each way.

My shrink said the same thing, but really I'd need to be unconscious to get there and back.

🙁

[b1b1b1 in reply to NeuroSeeker]

I am sure there are some major medical centers on the west coast. I am just not familiar with the names of those.

[NeuroSeeker in reply to b1b1b1]

California, probably. I don't know if UW has anything decent, and I'm already connected with Oregon Health and Science Univ. That's about it. Aside from southern California, the west coast doesn't have the kind of population density that encourages research. When OHSU's heart transplant team abruptly folded, people were left with no hospital to go to for over a year.

And I guess I'm just too tired to even try anymore. Too much anxiety for no benefit. I've been fighting for two years, and I am so unbelievably tired.

Hospitals and doctors as a whole aren't trustworthy, I think. There are exceptions, but most have shown their egos are bigger than their abilities.

I wish it was otherwise. I have hope in the kids coming up. I hope they make things better for themselves.

[Survivor1687 in reply to NeuroSeeker]

I spend alot of my time alone these days as well. If you ever want someone to talk to or even just to vent to you, I'm only a message away...

[NeuroSeeker in reply to Survivor1687]

Thank you. I may take you up on that. Sometimes you just have to tell someone.

[Survivor1687 in reply to NeuroSeeker]

(((hugs))) Hey, We all struggle. and Its okay, to not be okay. I know that saying may seem a bit 'cliche' if you will, at times, but it's the truth and a message I personally feel that people sincerely need to hear right now. Sometimes just having someone to talk to who can be of support during a rough time helps. I know it helps me alot, coming here & has been part of whats been keeping me fighting my own battle.. Just knowing there's a space I can come to for support with people who have been very kind and supportive has helped tremendously. Keep reaching out. I'm glad you are here. 💜

[Gordo6500]

Hi NeuroSeeker, I know what your going through, you can try high dose omega3 .Get a high quality liquid fish oil you will need 4000 mgs of combined DHA/EPA to feed your brain and heal it.You can also take CBD oil with it. This combo lifted my severe depression and anxiety . Hang in there and don't give up!

[NeuroSeeker in reply to Gordo6500]

That is something I'm willing to add. Thanks, Gordo. I will try it.