Sufferer Medical Trauma/Told I deserved it.

[MPH]

Ok. Not to derail the thread, but for future reference, if you quote someone—especially if you quote their whole post like you did with mine—then people will usually think you are responding to them.

I am no expert on how to do such things. I will try to do better.

 

[Jade-]

As the health coach from my medicare insurance company said. Doctors have been lying to you. I received a letter from the Vice President of the insurance company about asthma. Long detailed letter.

That insurance company sent a provider to my home. Went over my medical issues. I have a paper to that. It states asthma. Life threatening asthma.

Are you in the US? I have asthma and it's a pretty recognizable and treatable thing. An asthma attack can also be deadly and all it takes is a trip to a walk-in clinic or urgent care facility to get a breathing treatment and walk out with a prescription for an inhaler, which I have recently had to do. Surely there are plenty of doctors and/or facilities you can go to in order to get the right treatment and meds.

I guess I am confused by all of this. I'm not understanding why you're not getting treated for it. Cause if you really do have asthma and go to a doctor/hospital they will treat it and not risk you dying or risk a lawsuit. The only way they wouldn't treat it is if you actually don't have it. And they won't treat it if you don't really have it, regardless of what an insurance company says you have.

If you have life threatening asthma and are not being treated for it how are you not dead already? I mean, I know first hand what asthma is like and if you can't breathe then obviously it's gonna kill you.

 

[Friday]

I guess I am confused by all of this. I'm not understanding why you're not getting treated for it.

Asthma is a diagnosis of exclusion. Meaning, that about 80 other conditions have to be excluded, first (although McDoc’s only usually exclude 4-6), AND there has to be a positive result whilst using a rescue inhaler. There is no way to directly test “for” asthma. And? There are about 200-600 different “kinds” of asthma, although only about 50 of those are classified as “atypical asthma”.

IE, it’s a catch-all / means nothing diagnosis … that happens to respond to albuterol / ventolin.

- “Normal” asthma responds to mental, emotional, and physical triggers.
- “Atypical” asthma only responds to certain types of triggers, and not to “normal” triggers.

Which is why asthma is treated with such an incredibly wide variety of meds, in addition to albuterol/ventolin.

Because it’s still a “catch all” / IDFK??? non-diagnosis. Similar to many neurological “we don’t know what the f*ck it is, but we CAN treat it!” disorders.

 

[Jade-]

Well that still doesn't lessen my confusion @Friday . It's so simple to go get a breathing treatment and a prescription., if that's all the OP is wanting

 

[Friday]

Well that still doesn't lessen my confusion @Friday . It's so simple to go get a breathing treatment and a prescription., if that's all the OP is wanting

It’s clearly not what the OP is wanting… because it is allllllllllll tangled up with trauma shit.

They could get the best docs on the planet, with the perfect (series of) diagnosis, and the past would still be lighting them on fire and refusing to accept the present.

Because that’s mental illness for ya.

 

[MPH]

Are you in the US? I have asthma and it's a pretty recognizable and treatable thing. An asthma attack can also be deadly and all it takes is a trip to a walk-in clinic or urgent care facility to get a breathing treatment and walk out with a prescription for an inhaler, which I have recently had to do. Surely there are plenty of doctors and/or facilities you can go to in order to get the right treatment and meds.

I guess I am confused by all of this. I'm not understanding why you're not getting treated for it. Cause if you really do have asthma and go to a doctor/hospital they will treat it and not risk you dying or risk a lawsuit. The only way they wouldn't treat it is if you actually don't have it. And they won't treat it if you don't really have it, regardless of what an insurance company says you have.

If you have life threatening asthma and are not being treated for it how are you not dead already? I mean, I know first hand what asthma is like and if you can't breathe then obviously it's gonna kill you.

Jade, It is because of massive fraud. Doctors acting unethically.

I was told in 2020 this:

Unless I say I wanted it to be Sarcoidosis, I will never know what is wrong with me. I have heard that for 3 years now. I have heart damage due to not being helped on purpose. I have that on recording: 2014. I was told Doctors knew my disease going back to before I was disabled: 2011. They did it on purpose and now want me to take the blame for it. I keep asking for asthma Doctors, they keep sending me to Sarcoidosis Doctors. Then it says I wanted to go to them. A lie.

My exact issue. What happens to me. I think you may understand them.

My triggers are almost anything but room air. Humidity, cold, cooking, chemicals, smoke of any kind, various smells, Burger King exhaust, vehicle exhaust, taking a shower…so many. Worst triggers are cold, smoke and diesel exhaust.

Worst triggers. My oxygen within seconds goes to 70, I have 2 pulse ox’s. Both read high. My lungs fill with thick fluid I can’t cough out. I hyperventilate in an attempt to breathe. I feel like an elephant is sitting on my chest. I feel like I am breathing thru a straw. I have chest pain. After attacks on xrays, the bottom of my lungs get filled with old mucus. What helps? Time away from trigger. Cold, smoke, diesel it could take an hour or more for that to happen. To return to normal breathing and at least 92 on pulse ox.

When did it start and how many people know it? Fall 2010, I had attacks at birthday parties. Candles on a birthday cake with about 2 dozen family members there. I am not allowed to be involved with birthday cakes/candles since. I have to leave the room.

Worst attack ever in terms of death. Spring 2011. My daughter and I coming back from college visit. Cold outside. We are driving from Buffalo moving east. Outside Buffalo there is a steep drop off. We had truckers all around us. I was in the first lane. I had no where to go. Diesel exhaust triggered me. I started coughing to the point of throwing up. I could not control the wheel of the car. My daughter took the wheel of the car until I could get my breath. My daughter did not have her license at this time. I had said this to every Doctor since. They know it is life threatening for other reasons.

Other evidence and when. I triggered gall bladder surgery Easter 2011. Oxygen to 70. I was never told why that happened. I asked. This event was just before I was disabled. Or they knew why it happened. I keep asking 12 years later why. I will not have another surgery unless I know why. I know why: asthma. I need my pacemaker changed. Pacemaker/ICD installed for …what for it… asthma and prednsione induced diabetes. I keep getting the run around. No one will tell me:asthma. But I have many papers that say asthma. Severe, high risk asthma.

I have had many ER trips. Many events in Doctor’s offices. The ER trips? They quickly give me a nebulizer and send me home. Nothing else. Then tell me it is Sarcoidosis. My insurance told me the kind of attacks I am having mean a 3 day stay in the hospital. Relapse issues.

What about Doctor offices? Oxygen to 70. Can’t breathe. Not a word in their notes it ever happened. Wife present at some. They know how deadly it is.

I was given a nebulizer for Sarcoidosis asthma. There Is no such disease. So I said that to the lung Doctor. He says, you are right. We need to figure out what kind of asthma you have. Then dumps me as a patient the very next day.

I go to Vermont. Lung Doctor goes on and on and on about Sarcoidosis. Ethics/Insurance already told me I have asthma. I don’t remember anything about the appointment except for the question I asked. Do I have asthma? She says yes. Then goes on and on about Sarcoidosis. The disease I don’t have. I bring asthma action papers to every visit. It says talk to your Doctor. I need my wife to understand what to do In any attack. She panics. I get crickets.

I had many horrible attacks 2017/2018. It seems the asthma I have various Year to year. I had a heart workup 2020. Here are the new heart issues: leaky pulmonary valve, dilated vena cava, high pulmonary pressure. THAT is how bad the asthma attacks are that the Doctors know I have. Dilated vena cava means in itself death. Unless it‘s cause is solved, it can heal. Asthma is what I have,

I tried to go to an asthma trial in Pennsylvania, I go over my medical issues. He hears the heart issues. He says, you have some serious issues with your asthma. You can’t do an asthma trial. Those heart issues are due to asthma and it is well known.

Worst yet, I recorded everything. But no one will take the recordings. In NY, they waited for a life threatening asthma attack to happen. I showed Ethics what I received. My care at that ER. My aftercare on discharge. This was 3 years after I first reported abuse. Many asthma attacks. I told ethics, this is going to continue no matter what you do. They said Doctors can’t. Doctors did. I said the reason is on recordings. They said whatever I say is hearsay and whatever the Doctors put down is gospel. Doctor way back said to every time I was harmed, “Doctors listen to other Doctors and don’t listen to their patients.” The most honest thing I heard.

Yes US. Lived upstate NY. Moved to Virginia. Same exact abuse. They know it is life threatening. They are screwing with me. I keep telling them, you don’t want to join in on what was done to me in NY. They do it anyway. Oh yes, I die soon. It is not suicide.

What is happening for the last 4 weeks. I have serious sinus issues my whole life. I strongly believe there is a connection with asthma. As that junk makes it way to my lungs. Like now. I have tons of stuff in my lungs I cough out. I have chest pain left side that comes and goes. Had this since asthma. It hurts sometimes when I breathe. What helps? Nebulizer.

I am NOT self diagnosis myself. I am being lied to and find out many things by going to Doctors outside of records. I was told asthma long ago, by a Sarcoidosis Doctor I emailed. Said asthma. I talk to asthma Doctor about heart issues, he says serious asthma. It is not me. Or confirmation of asthma by insurance Doctor who came to my house. Told me to make sure I get Methacholine challenge to confirm asthma and how bad. I have been told it is way too dangerous for me to get one. But not dangerous to have staged asthma attacks.

I am very sorry for showing anger at times. No one will understand the hell I have been through. The recordings I have do explain it. It is that bad.

 

[MPH]

Asthma is a diagnosis of exclusion. Meaning, that about 80 other conditions have to be excluded, first (although McDoc’s only usually exclude 4-6), AND there has to be a positive result whilst using a rescue inhaler. There is no way to directly test “for” asthma. And? There are about 200-600 different “kinds” of asthma, although only about 50 of those are classified as “atypical asthma”.

IE, it’s a catch-all / means nothing diagnosis … that happens to respond to albuterol / ventolin.

- “Normal” asthma responds to mental, emotional, and physical triggers.
- “Atypical” asthma only responds to certain types of triggers, and not to “normal” triggers.

Which is why asthma is treated with such an incredibly wide variety of meds, in addition to albuterol/ventolin.

Because it’s still a “catch all” / IDFK??? non-diagnosis. Similar to many neurological “we don’t know what the f*ck it is, but we CAN treat it!” disorders.

This COULD be true but not in my case. They KNEW it was asthma in 2011 and I was told so.

The disease they put it on: Sarcoidosis. Sarcoidosis is dry cough.

Me: Horrible productive cough.

Doctors KNEW what was wrong with me in 2011. They INCLUDED all those other diseases. On purpose.

I have recordings.

There are many direct tests for asthma.

I will give you one. Breathing test: High DLCO. Asthma. Everything else: low DLCO.

They keep saying mine was Sarcoidosis. LOW DLCO. Mine: High DLCO. Or well known asthma.

What causes high DLCO?​

Some conditions cause you to have a higher DLCO than expected. These include:

• Asthma.

It’s clearly not what the OP is wanting… because it is allllllllllll tangled up with trauma shit.

They could get the best docs on the planet, with the perfect (series of) diagnosis, and the past would still be lighting them on fire and refusing to accept the present.

Because that’s mental illness for ya.

You know nothing and are proud of it.

 

[Rose White]

No one will understand the hell I have been through.

That sounds incredibly difficult and isolating.

 

[MPH]

Well that still doesn't lessen my confusion @Friday . It's so simple to go get a breathing treatment and a prescription., if that's all the OP is wanting

Jade you have asthma. Go ask your provider if it says you have high DLCO on breathing tests, what does that mean?

 

[DharmaGirl]

Why are you refusing to believe you have sarcoidosis? You could have had asthma, and then developed sarcoidosis. Not from the asthma, just on it's own. Many doctors are telling you it's sarcoidosis and you are refusing to believe them and would prefer that they say you have asthma. I'm sorry you don't believe them.

 

[MPH]

That sounds incredibly difficult and isolating.

Even people here saying it is mental. UGH.

When I have recordings. When my wife was present. My daughter. My son. When ethics told me Doctors are screwing with me. When my insurance tells me. When the Medicare insurance provider comes to my house tells me. Mental health providers tell me I was lied to. Mental health providers telling me I “deserved it”.

But it is mental disease.

No the Doctor who is mad at me. The Doctor who did this to me. The Doctor who 2 mental health professions told me was responsible for this abuse. This Doctor told me to go kill myself. THAT MAD.

I have recordings.

I took video of cold weather trigger. Pulse ox readings. One step in cold weather. How the hell is it mental if it happened in a surgery? Saying it is mental is amazing stupid.

 

[MPH]

Why are you refusing to believe you have sarcoidosis? You could have had asthma, and then developed sarcoidosis. Not from the asthma, just on it's own. Many doctors are telling you it's sarcoidosis and you are refusing to believe them and would prefer that they say you have asthma. I'm sorry you don't believe them.

Sarcoidosis does not turn into asthma. MANY Sarcoidosis places say so. Well known they are 2 seperate diseases.

Again Ethics told me Doctors are screwing with me with the diagnosis of Sarcoidosis. I have asthma.

I BELIEVE ETHICS.

You know nothing and are proud of it.