Chronic Illness

[Jumper]

One would wonder why those diagnosed with psychiatric disorders; are not tested for this, but it's no surprise really, the profits for antipsychotics make more money.

Prevalence of bipolar disorder in the US:
— 5.3 million people
Prevalence of schizophrenia in the US:
— 3.2 million people
Prevalence of a depressive episode in the US:
— 17.3 million people

Cost of the anti-NMDA receptor antibody test: $85-$890

Prevalence of anti-NMDA receptor encephalitis: only 600-700 cases have ever been described.

Does not make sense to spend >2.6 billion dollars to screen psych patients, in order to identify < 0.002% that may have this. That's why they use a combination of strategies (involving story of symptoms) to identify those that need to be tested.

The makers of the test could make billions if so. Also, the treatment for NMDA receptor encephalitis is very expensive (not the steroids, but IVIG/Plasmapheresis/Rituxan)... so those companies could still financially benefit.

 

[Cerdiwen]

I just joined literally tonight, but I suffer from several chronic illnesses.I have EDS/POTS. Chronic migraines.Diabetic type 2, low blood pressure, high blood pressure (i can't control my blood pressure) it can go both dangerously high and dangerously low.It's ruined my quality of life.My kids are 11 and 12 and they are the ONLY ones besides my husband to keep me going, but tbh i'm more of stress and a burden to them, and I always wonder if I was gone if life would be easier for them.No more hospitals, no more doctors, no more me.
An idea what my body likes to do :/.

 

[Skathon]

I would list all of my chronic diseases/symptoms, but one of them is chronic fatigue...

 

[Cleopatra123]

I would list all of my chronic diseases/symptoms, but one of them is chronic fatigue...

Then your list of symptoms and illnesses are most probably related to the ravages of chronic fatigue syndrome. I'm so sorry to hear it, and I hope you get relief. My experience is that natural methods are effective sometimes at reducing the symptoms.

 

[Deleted member 1465]

I don't even have a diagnosis. Just lots of unbearable symptoms and doctors who don't listen. But yeah chronic illness comes with mental issues too. But just watch as they try and pin all your physical problems on your mental issues. Cart before horse? I nicked a pic...

 

[Cleopatra123]

I don't even have a diagnosis. Just lots of unbearable symptoms and doctors who don't listen. But yeah chronic illness comes with mental issues too. But just watch as they try and pin all your physical problems on your mental issues. Cart before horse? I nicked a pic...
View attachment 24784

Ain't that the pathetic truth. LOL. I told a hospital twice, and a cardiologist who told me to exercise, that I was having a stroke. Yes, I was!!!!!! I rushed to the doctor feeling very sick with a brown and white tongue and choking on food. Told me he saw nothing. Took a picture of it the next day, there it was, the battle cost me 25 pounds. Having been a nurse, it upset me even more to know that people who need help are routinely dismissed, insulted and neglected, or given the wrong medicine. US #24 in health care in the world. And we pay more for it, in more ways than one, than anyone else in the world. Trump care anyone!

Ain't that the pathetic truth. LOL. I told a hospital twice, and a cardiologist who told me to exercise, that I was having a stroke. Yes, I was!!!!!! I rushed to the doctor feeling very sick with a brown and white tongue and choking on food. Told me he saw nothing. Took a picture of it the next day, there it was, the battle cost me 25 pounds. Having been a nurse, it upset me even more to know that people who need help are routinely dismissed, insulted and neglected, or given the wrong medicine. US #24 in health care in the world. And we pay more for it, in more ways than one, than anyone else in the world. Trump care anyone!

Right, if they're too negligent and misinformed their best diagnosis is that you're crazy!

 

[BlueWidow]

 

[Carina]

View attachment 25609

I love that meme image--it can be so true and people just don't think of that!

 

[Cleopatra123]

Ain't that the pathetic truth. LOL. I told a hospital twice, and a cardiologist who told me to exercise, that I was having a stroke. Yes, I was!!!!!! I rushed to the doctor feeling very sick with a brown and white tongue and choking on food. Told me he saw nothing. Took a picture of it the next day, there it was, the battle cost me 25 pounds. Having been a nurse, it upset me even more to know that people who need help are routinely dismissed, insulted and neglected, or given the wrong medicine. US #24 in health care in the world. And we pay more for it, in more ways than one, than anyone else in the world. Trump care anyone!

Right, if they're too negligent and misinformed their best diagnosis is that you're crazy!

Yes, and they never seem to learn really. Calling MS hysterical paralysis years ago, they should hang their heads in shame for the pain they've caused dismissing people's reality of suffering.

View attachment 25609

Fickle fate! It seems most are walking in stiff shoes in our modern culture, LOL

 

[Silence]

I sort of know a little what you going through i have arthritis in most of my joints. My back is falling at the very bottom my disc it all most gone it bone on bone now . And it slowly destroying the nerves that come out at that point so have permanent pins and needles in my toes when it gets bad i can lose all feeling in my feet. One day i am going to end up in a wheelchair pissing and shitting myself o joy of joys. Any way i be dead befor that happens i going to make shore of it sod what any one else thinks. Any all my hugs to you wishing you well as you can be HUUUUUUGGGGGGSSSSSSSS :D

Yup, same here gonna do the same before my illness takes my mobilty away from me. :)

 

[RileyTanaka]

I'm really glad this thread exists - in fact, I think it would be useful to have a chronic illness megathread since it's such a common reason people are driven to suicide.

I'm suffering from a (currently undiagnosed) neurological illness that is causing me painful, daily neurotoxic symptoms, autoimmunity, and neuropathy. I haven't yet reached the level of illness that leads me to be bedbound, but it has definitely destroyed my life - financially, employment-wise, and with my family (who don't believe I'm ill). I've been fighting with this discovery for about 3 years now, and the ONLY medical professionals who have ever taken me seriously were integrative/alternative health professionals who are trained to look for underlying causes of pathology (i.e., fungus, mold, lyme, metal poisoning, EMF, parasites, virus, etc.).

I'm currently looking into rifing - to help myself and hopefully others if I ever reach a "liveable" state again. Fuck 90% of doctors who are dismissive and do nothing until your hidden illnesses progress to a point where you're rendered disabled. Fuck standard diagnostic testing that is inaccurate. Fuck people around you who don't give a damn about how illness affects you, accuse you of dishonesty, or don't care unless it's fucking cancer. Fuck euthanasia policies only caring if you're older or have stage 4 cancer. Fuck the American healthcare system for driving people into bankruptcy with "treatments" that don't even work and are often not even fucking safe. People will not understand how debilitating a chronic illness can be until they actually live it for one day themselves.

If I don't find a clear path through to a better qualify of life this last time around, I'm catching the bus and apologizing to no one.

 

[Cleopatra123]

I'm really glad this thread exists - in fact, I think it would be useful to have a chronic illness megathread since it's such a common reason people are driven to suicide.

I'm suffering from a (currently undiagnosed) neurological illness that is causing me painful, daily neurotoxic symptoms, autoimmunity, and neuropathy. I haven't yet reached the level of illness that leads me to be bedbound, but it has definitely destroyed my life - financially, employment-wise, and with my family (who don't believe I'm ill). I've been fighting with this discovery for about 3 years now, and the ONLY medical professionals who have ever taken me seriously were integrative/alternative health professionals who are trained to look for underlying causes of pathology (i.e., fungus, mold, lyme, metal poisoning, EMF, parasites, virus, etc.).

I'm currently looking into rifing - to help myself and hopefully others if I ever reach a "liveable" state again. Fuck 90% of doctors who are dismissive and do nothing until your hidden illnesses progress to a point where you're rendered disabled. Fuck standard diagnostic testing that is inaccurate. Fuck people around you who don't give a damn about how illness affects you, accuse you of dishonesty, or don't care unless it's fucking cancer. Fuck euthanasia policies only caring if you're older or have stage 4 cancer. Fuck the American healthcare system for driving people into bankruptcy with "treatments" that don't even work and are often not even fucking safe. People will not understand how debilitating a chronic illness can be until they actually live it for one day themselves.

If I don't find a clear path through to a better qualify of life this last time around, I'm catching the bus and apologizing to no one.

I'm so sorry you are suffering from medical inadequacy and outright neglect, and I can personally sympathize with you symptoms. I am a retired nurse, living for decades with Myalgic encephalomyelitis/Chronic fatigue syndrome, who has survived only, and only with alternative symptomatic treatments. Also, I'm a retired nurse. Your assessment of your possible problems is a good start. It could be any of the things you mention. Let me ask; have you had a brain scan, any problems with blood pressure or sugar levels, had a complete bloodwork panel for cultures of organisms, lyme, mild fungus, parasites and fungus? What symptoms of autoimmunity do you have; any inflammatory conditions? I know just what you mean about people not believing you; when you are hurting the most, you are invisible. While I suggest a good idea for alternative practitioners, I think the above tests would be necessary to address the problem. Please let me know if I can help you any further, I do a lot of research on homeopathy and herbs and Chinese medicine; but you will need to rule out certain things with the tests. Best of luck, please let me know how you are doing, and know, you are very much, not alone, in modern diseases doctors know nothing about. Good luck. Cleopatra

 

[RileyTanaka]

I'm so sorry you are suffering from medical inadequacy and outright neglect, and I can personally sympathize with you symptoms. I am a retired nurse, living for decades with Myalgic encephalomyelitis/Chronic fatigue syndrome, who has survived only, and only with alternative symptomatic treatments. Also, I'm a retired nurse. Your assessment of your possible problems is a good start. It could be any of the things you mention. Let me ask; have you had a brain scan, any problems with blood pressure or sugar levels, had a complete bloodwork panel for cultures of organisms, lyme, mild fungus, parasites and fungus? What symptoms of autoimmunity do you have; any inflammatory conditions? I know just what you mean about people not believing you; when you are hurting the most, you are invisible. While I suggest a good idea for alternative practitioners, I think the above tests would be necessary to address the problem. Please let me know if I can help you any further, I do a lot of research on homeopathy and herbs and Chinese medicine; but you will need to rule out certain things with the tests. Best of luck, please let me know how you are doing, and know, you are very much, not alone, in modern diseases doctors know nothing about. Good luck. Cleopatra

If it's okay, I'll PM you - that way I don't clog up this thread with my health stuff.

 

[Silence]

I'm so sorry you are suffering from medical inadequacy and outright neglect, and I can personally sympathize with you symptoms. I am a retired nurse, living for decades with Myalgic encephalomyelitis/Chronic fatigue syndrome, who has survived only, and only with alternative symptomatic treatments. Also, I'm a retired nurse. Your assessment of your possible problems is a good start. It could be any of the things you mention. Let me ask; have you had a brain scan, any problems with blood pressure or sugar levels, had a complete bloodwork panel for cultures of organisms, lyme, mild fungus, parasites and fungus? What symptoms of autoimmunity do you have; any inflammatory conditions? I know just what you mean about people not believing you; when you are hurting the most, you are invisible. While I suggest a good idea for alternative practitioners, I think the above tests would be necessary to address the problem. Please let me know if I can help you any further, I do a lot of research on homeopathy and herbs and Chinese medicine; but you will need to rule out certain things with the tests. Best of luck, please let me know how you are doing, and know, you are very much, not alone, in modern diseases doctors know nothing about. Good luck. Cleopatra

I am suffering from the same. I am pretty sure I have Multiple Sclerosis (not diagnosed yet) and I am suffering from it for the past 3 years. The doctors think its in my head and the same goes for my family. Lost all hope, the symptoms are pretty serious and at this rate I think I will become disabled soon and hence waiting for the lockdown to end so I can quickly buy SN so when all hell lays loose I can finally CTB.

 

[Brick In The Wall]

I hope you're at peace now @BlueWidow. It's hard seeing your name around here but I'm glad your contributions are still making a difference. I still think about you and although you may be gone you're not forgotten

 

[Squiddy]

I hope you're at peace now @BlueWidow. It's hard seeing your name around here but I'm glad your contributions are still making a difference. I still think about you and although you may be gone you're not forgotten

I also miss BlueWidow

 

[Cleopatra123]

I am suffering from the same. I am pretty sure I have Multiple Sclerosis (not diagnosed yet) and I am suffering from it for the past 3 years. The doctors think its in my head and the same goes for my family. Lost all hope, the symptoms are pretty serious and at this rate I think I will become disabled soon and hence waiting for the lockdown to end so I can quickly buy SN so when all hell lays loose I can finally CTB.

Hello Silence: Yes, we have no voice. The disease I mentioned ME/CFS is,in some research I've read, considered a cousin to MS. In my case, the more physical or mental energy (and stress) I'm involved in; the weaker my muscles become; and a host of all decades of organ damage; therefore the name "fatigue", for so long thought as hypochondria; finally, in current research, as the slow destruction of the body. In either case, there is brain inflammation involved, with different areas I believe. I think it is necessary for you to see someone who specializes in MS; any regular MD is just going to rebuff you. I have occasionally passed some research claiming to help MS, but I would have to dig further, if you wish, I will look into it and pass on the info. to you. I'm so sorry you are suffering from this, or whatever it is and I feel the same way about cbt: I am fully aware that should something really give I could be a conscious vegetable. Wherever you live, find the nearest high rated hospital, mostly in big cities, and search for a specialist in MS. You should be sure of what you are facing, and know for sure it is not fixable, before you must doom yourself. And please, do your research carefully, it is dangerous to get SN, and if you fail, you would be facing trauma, injury or more people who don't believe you. With all the methods I've researched, it is no easy task. I wish you the best of luck, and real info. with which to decide your fate.

 

[Silence]

Hello Silence: Yes, we have no voice. The disease I mentioned ME/CFS is,in some research I've read, considered a cousin to MS. In my case, the more physical or mental energy (and stress) I'm involved in; the weaker my muscles become; and a host of all decades of organ damage; therefore the name "fatigue", for so long thought as hypochondria; finally, in current research, as the slow destruction of the body. In either case, there is brain inflammation involved, with different areas I believe. I think it is necessary for you to see someone who specializes in MS; any regular MD is just going to rebuff you. I have occasionally passed some research claiming to help MS, but I would have to dig further, if you wish, I will look into it and pass on the info. to you. I'm so sorry you are suffering from this, or whatever it is and I feel the same way about cbt: I am fully aware that should something really give I could be a conscious vegetable. Wherever you live, find the nearest high rated hospital, mostly in big cities, and search for a specialist in MS. You should be sure of what you are facing, and know for sure it is not fixable, before you must doom yourself. And please, do your research carefully, it is dangerous to get SN, and if you fail, you would be facing trauma, injury or more people who don't believe you. With all the methods I've researched, it is no easy task. I wish you the best of luck, and real info. with which to decide your fate.

The thing is my financial status is pretty rough we hardly make ends meet and in India the doctors charge alot. I cant waste away my salary consulting neuros and specialists and they suck away your bank balance pretty quick. I would rather help my family out as much as possible. Yes obviously I am going get a look into it and get a closure for myself and my family so I will get it diagnosed and then pursue further actions. But it hurts not able to live normally as you did before, you become a shadow of your previous self and no one even believes that you are sick unless you have some physical injuries etc.