ER doctor does not believe I have IA - A rant

I was just discharged from hospital a few hours ago. I had another anaphylactic attack, probably the worst yet. I didn't get better until I had had four shots of adrenaline: 2 epi pens at home and 2 shots given by paramedics. I was so in and out of conciousness that I barely remember any of it. I was rushed to hospital in critical condition and taken straight to resus.

I was then told by a doctor several hours later that there was no evidence of anaphylaxis, that he didn't believe I had anaphylaxis. Not only that, but he only gave me a prescription for one epi pen, not two, even though my attacks are getting to need more epi pens each time and I need a minimum of three at home. He said that no one ever needed 4 shots of adrenaline.


Now let's forget for a moment that I've been diagnosed with Idiopathic Anaphylaxis by two unrelated IMMUNOLOGISTS. Let's forget that I've been living with and trying to understand this condition for a year and in that year I've had 15 or so anaphylactic attacks of varying magnitude. And let's also forget that I was in such an altered state of conciousness that it was totally up to the paramedics to administer two doses of epinephrine, and these medical professionals believed me enough to give me not one, but two further doses. Let's forget all that.


Assuming I am a crazy person with Munchausens, why on Earth would I let myself be put through a bone marrow biopsy knowing I wasn't ill? My back still smarts from that, and I've been on codeine for days. Why would I give up my job, my degree, my former life for this stupid illness? Why wouldn't I just throw my hands up in the air and say “Sorry guys, I was just joking. Let's go back to being normal.”? Why would I put myself through the pain and stress of going to hospital over and over again, having tests and trying to find the issue? For attention? Believe me, I've had more medical attention this year to last me a life time.


It just annoys me because my symptoms of anaphylaxis are no longer so visible. Yes, I used to break out in hives. It changed. I now just get breathing symptoms, increased heart rate, and eventually angioedema of the throat, which if I let it go on long enough, will close off my air supply. So now, I really have to monitor my symptoms to be sure I'm in an attack, and act accordingly. I don't need the voices of doubting doctors in my head at that moment telling me that I'm just faking it. I need to focus on what has been told to me by immunologists (you know, those people that actually know what they're talking about). They have never questioned my presentation and are not phased by the fact that my attacks require more and more epi. They have pegged me as anaphylactic from day one.


Tonight was really scary. In my head, I said my goodbyes to my loved ones in that resus room. No one wants to go through that every day, every other day, every week, every month. To be told on a night like this that you're faking it, that that's your fault. As a former medical professional, that's unforgivable and rude. Even if that doctor felt that way, he should not have said as much. This has happened to me before, but it enrages me every time.

Comments

I spent 6 months rather like that. I was constantly eating frozen yogurt to keep my throat open. My ANA was very high. What finally fixed it for me was corticosteroids. They should have given me some for perhaps a few weeks and tapered me off to see if my system had recovered and could respond normally.
Unfortunately it was a flippant rheumatologist who dismissed me without testing as having a lupus like syndrome that would require corticosteroids for life. I much later found that was not the case. Now I try to recover my adrenals from atrophy caused by the corticosteroids. Don't let that happen to you.

I discovered that I was extremely low in vitamin A and that most supplements contain carotene instead of true A, and carotene converts very poorly to A. Without the vitamin A my immune system struggled mightily and went into overdrive. Now that I eat liver which has vitamin A and other nutrients, I am much better - not so reactive and much less likely to contract disease.

I'm very glad you are still with us. Perhaps my experience might help you.
 
I am so sorry that you went through this and your story enrages me that I could scream. Do not listen to those ER docs or let them into your head. You have immunologists who know how ill you are, you have this board, and do not need to waste your precious energy trying to convince anyone. We believe you.

I went through ANA episodes in summer of 2015 where I was hospitalized (not to the level of what you just experienced but they were very bad and reached the point I was having ANA to all food but water). I was in hospital for a week and one doc (who saw me for grand total of five min) decided that I had a "fear of eating". Now, I did not have a fear of eating in the prior 44 yrs of my life but during those episodes, I thought I was going to die of ANA in front of my mother & family.

I don't know where you live but I was able to connect w/a phenomenal mast cell specialist who is still my doc today. I'm now on high dose IVIG every 3 wks and my MCAS and all allergic reactions to food & smells are in complete remission. I have no idea if IVIG would help you but wanted to mention just in case. I still take MCAS meds but tapering off many (was taking 7 and now taking 4). We think that 3 yrs of living in a rental w/toxic mold was the final trigger that brought down my immune system until my body could no longer tolerate food. We moved and got rid of all our belongings.

Is food the trigger of your ANA or is it completely idiopathic where you cannot link it to anything? For me it started w/severe allergic reaction to a yellow food dye and then progressed to ALL food and then even to smells. This issue, thank God, is now completely gone (although I do not know if it will return when I stop IVIG in future).

Please PM me if I can help. What you went through is real and is scary as all hell. We believe you and truthfully, those docs in the ER who did not can f**ck off and they are irrelevant. You know your truth. They do not matter.
 
I am so sorry you're going through this. It sounds like an absolute, total nightmare. I wish I could offer you more than my sympathy. Please stay strong if you can!
 
I'm shocked and sorry that you have had to go through such a frightening experience followed by such an idiot of a doctor. I'm tempted to suggest that you send a copy of what you have just written to the hospital to accompany a complaint about that doctor. But you will know best how you want to handle this. Best wishes, and I am very thankful that you are still with us.
 
I have never been one to even think of suing someone, but in this case, I just might suggest it! So sorry that had to happen to you! Thankfully there are several that did/do believe you. That doctor should not be allowed to practice emergency medicine in my opinion.
 
It's too bad you even had to go to the ER. That dr. had your life in his hands and he says that? It's inexcusable and very, very scary. We all need to keep this in the back of our minds because it happens way too often.
 
very sorry you've had to go through that. The comments of such doctors can be as traumatising as the actual health issue. My uncle who has systemic mastocytosis has told me that many hospitals cant even recognise when someone is having life threatening anaphalactis. (my uncle has had to be resusitated at times due to that).
 
Very sorry that you are going through this. I can speak first hand to my son having ME as a teenager and having and anaphylactic reaction to routine allergy testing in the doctor's office. A physician who does not respect the power of this kind of reaction and of the protective mechanisms of the body (immune and pain for example) should probably not be practicing today. That being said, I work in healthcare and know that many physicians are trained to identify and separate diagnosis from each other when most patients have a complex mix of more than one diagnosis. Case in point, the immunologist we were seeing (at a very well known and highly ranked facility) did not believe that the anaphylaxis and the ME were related. The Resident who was with him appeared to think they were. In the ED their primary role is to "save lives" so once that is accomplished they typically want to move on. This is not true of all ED physicians including a friend of mine who initiated a conversation more than 20 years ago about having Physical Therapy in the ED. I hope for you that you will be able to find resolution or significant improvement in your ME. If you do, I am confident your anaphylactic issues will improve as well. That was our experience with our son.
 

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