Any Lupus Patients Not Taken Seriously in the ED?

[Guest_08123851]

Greetings All, 

I was diagnosed with Lupus in November 2024 after having symptoms since 2018. 

 I took trips to the ER by ambulance usually once a quarter when I would have 'flare ups' but was always discharged to my GP with "ya look fit" and "it's anxiety". 

I visited every '__ologist' you can think of before an endocrinologist caught some ana and anca's on a blood test. Now 7 years on my symptoms come and go. Sometimes once a month, sometimes twice. 

I have been to the ED twice in 2 weeks, because my heart rate goes up and down like crazy, and when I stand up my blood pressure goes thru the roof. I hit bp 164/127 in the ED yesterday when standing, but my ECG was ok, so they just discharged me (after performing all test in the ED waiting room. I even had an IV and blood test from the waiting room despite arriving by ambulance. The nurse did postural blood pressure test from the waiting room chairs. It felt off going to the hospital by ambulance, only to be treated in the waiting room. 

My main ? 

Does anyone else with Lupus feel like the hospital could care less? 

I was so happy and relieved when I finally figured out what was wrong, but now it's like I'm back at the start again. 

Any responses would be appreciated. 

J

[indigo22]

Hi J,

Welcome and thank you for reaching out to us.

I am sorry to hear you are dealing with a very real illness that is not being taken as seriously as it should be.

Unfortunately, Western Medicine has a very backward way of looking at health and the reason you have these experiences is that the doctors are not trained in medical school for conditions like yours that are connected with the immune system, they are not even trained in proper dietary information. If they were, there would be far less people in serious ill health and far fewer people needing to buy prescriptions. The big drug companies know this, and to my knowledge, have a hand in what doctors are and are not taught. I had a similar experience with the ambulance personnel one time and was brushed off, only to discover a few days later that a number of other people had been in the same boat as me with a particular medication, some of whom had actually died.

It is the few doctors who take the time do their own research, to be the best physicians they can be, who are the ones who actually live up to their vow to 'First Do No Harm'.

There is a doctor by the name of Brook Goldner, who you can look up online, who cured herself from Lupus and has books and resources that I think you will find very helpful. I hope going down this road will mean you fully recover and never have a need to go through that type of indignity again at the hospital.

I would be interested to hear how you go and will be here if you want to continue the conversation.

Take good care of yourself,

indigo