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Maiysa

Doc Refused To Do Mcad Or Tryptase Test On Me-Said I'm A Liability??

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I had an interesting morning yesterday. After eating a bowl of Asian noodles the night before, I had a reaction. My sinus's instantly went dry. At midnight my blood pressure jumped from being low to 146/75 and I was sick in the bathroom all night. It was scary because I couldn't get warm, shivered all night-then the sweating, dizziness and fainting continued for a long time. This type of intensity happens several times a year, so I know it's not food poisoning. My throat felt tight in the morning-my tongue was red, so I drove to an urgent care facility early in the morning. Of course by the time I got there my body started to ease up. I was still having bathroom issues but throat felt better. I told Doc that I was told this is possibly an autoimmune situation, but if we could please do a tryptase test to rule out that it's not an allergic reaction or a mast cell situation. He said, well you are fine now, it's my job to stabilize you & you are stable. So strange, but this place has never said this before. But, I said I understand that, but this doesn't happen all the time and I would just like to make sure it's not an allergy instead of something else. I told him I work mostly with Mayo for this situation-my insurance doesn't cover them, and I usually get my tests done here through my health care and take them to Mayo. And it takes a few weeks to get into my family doc or any other doc in town and if I could just do the test now since I just had the worst reaction I've had in a long time. He said, well, I would love to help you, but if I do a tryptase test and you have mast cell, I'm stuck with you for the next ten years! I asked what? He said, if you have Mast Cell, I will have to follow up with you for the rest of your life and if I'm on vacation and you get sick and I'm with my family, I have to stop everything I'm doing to come back to make sure you are getting treatment okay. Huh??

I said to him, No no, I will not bother you with this, this is going to my doc at Mayo or who ever else can help me and that's only if it's positive, but I won't know till I do the test. Then he told me that the lab there doesn't do this test. I told him that's not true, I did one here the other day. He said then you go back to that doc and get him to do the test. I said, I did have slightly elevated tryptase, but that doc didn't seem to know about the Mast Cell disorder, and am in the middle of trying to find a doctor to work with on this, but since I had a terrible reaction can we just rule it out before I spend time and money going to another doc. It might not even be my issue. He said, yes, this is probably what you have, so what! take an antihistamine! I said, okay, Can we please just make sure and then I will not hold you responsible. I will sign something. He said, so you want me to put my whole career on the line to help you? I said, wait...what? He said, you liability if you have this. What???I said. He said you could sue me if you don't get help with this if you are positive. I said, no, I'm not going to sue you. Wait...what? I was so confused.

He said and if you just have active mast cells, so what, take an antihistamine.-I am not going to be tied to you for the next ten years of your life because you want a test. He said, in my country I would love to treat you, you are obviously having some serious issues, but what doctor has two hours to do that and I'm not licensed for that here. He said he doesn't have license in US to be family doctor. Wait...what? I said again. He said, no I don't want to be tied to you for next 10 years. I said well, I would just like to know for sure please. I smiled the entire time and I was so nice because he seemed like he was going to snap at any moment. (Unfortunately this is the same clinic that took 2 years to diagnose a severe lung infection and they also missed for a year and a half that I had thyroid cancer and toxic thyroid. They didn't put it on the summary report from my CT scan. I'm the one that went over my records and found the nodules myself a year and a half later while I was on my death bed...knowing they missed something- Anyhow, I have to be a little bit diligent in my own care now since I know they don't care) So, the doc said, fine! I do test on you. I risk my whole career for you! and he slammed the door.

He went outside and yelled something and came right back in. (Somebody needs a nap I thought) :) He said he talked to his supervisor and he said he cannot do test and to send me home and they will give my money back. He said, I will take you up front and get your money back. He was so angry. I swear to you, he did not have 5 seconds to explain that situation to any supervisor. He went outside and swore in Korean and came back in that's what he did. He took my coat and everyone was staring at me in the triage and I said, can someone tell me what is happening? I'm so confused? And he said, you liability!! His english wasn't so good. I was taken up front to the desk and he said to the receptionist, she never saw doctor, give her money back.

My face was covered in tears and I was just in shock I didn't know what to do. I said, no I saw the doctor but he refused to help me. They didn't know what to say.....And I just left. I was so upset, embarrassed and confused. It was shocking to say the least. I wish I had a camera on me, because you would have had to see it to believe it. This is my health care that I pay $800 for month. Unbelievable. But I lived and I'm much better, a bit tired, but ok. I cried for a just a moment after, didn't want to spend any more energy on such a jerk anyhow. I understand that some things have to be done through primary and I will try to get a standing order for this test, but this guy was just so offensive. But I think I'm becoming desensitized to our health care system here in Nevada. I have a few good docs so I will just try something else. I can't imagine how the rest of that guys day went. He yelled, you have stitches or cold you come see us, otherwise, you find other doctor. Ummm...okay. Wow.

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So sorry! We all have had doctors who wished we'd just go away - but that was extreme. I hope the next doctor you see will live up to the codes he swears to in being a doctor.....and take care of his patients.

Issie

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Oh goodness, Maiysa, you didn't need that! He was way out of line. Even if he couldn't help you, he needed to find a better way to express it. I'm not sure why he would need to follow up on you for the next ten years as long as he made an appropriate referral if your tryptase came back high. In the meantime, I would talk to your family doc and ask for his specific instructions on what to do when you have a bad reaction in the future. I would also call and file a complaint with the manager of that urgent care facility. In my mind, he was actually creating the liability by refusing you care especially since you were clearly haivng some sort of anaphalactic response...what if it had gotten worse again on your way home? Not appropriate behavior at all. I'm so sorry you were treated this way.

Katie

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:o :o :o Bizarre to say the least! And such a shame because it was the perfect opportunity to possibly capture something in the blood work. I had trouble getting some of this testing done too. I wanted to have the 4 hour methylhistamine test and I tried to explain to the Dr., who shrugged his shoulders because he had no clue what I was talking about, but agreed anyway, but the lab insisted they only do a spot test. So I had to settle for that and of course it was negative. I tried a few years before that to have this same test with Dr. Stewart, but the lab said they only do histamine, not methylhistamine. He just went along with it, which I still don't understand... it was negative. So I still don't know if I might have MCAD because I can't get the right freakin' test. Maybe you can line up a Dr. who you know will do the test and then be ready to go when it happens again. Or I think I remember Julie saying? that she has a prescription she carries around, so she's ready if a reaction happens. So sorry this happened. It's bad enough to be feeling terribly physically - you don't need to be fighting Doctors on top of it!

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So sorry you experienced that, it sounds awful. One of the worst parts of our condition is the numerous doctors that don't understand and brush us off. Emergency rooms are often the worst places because they don't take anyone seriously unless they are literally dying. I remember being in the ER with my mom after she fell and we literally waited all night for an Xray while the drs stood around gossiping. Urgent care may not be the right place for some of these tests, but that is no excuse for this dr's terrible bedside manner. The best thing to do when encountering a doctor like this is to move on and find someone else who IS willing and interested to help (and capable of helping, haha). With something like MCAD, you may need a specialist in the area to handle things. Though few and far between, there are some good docs out there!

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Wow Maiysa-

So sorry that this happened to you- EVERYTHING: the reaction & the doc's bizarre reaction :( Your account is written so well. I suggest copying it to a word document & presenting it to the owner of the clinic. Just because they refunded your money; does NOT mean that they fulfilled their obligation to you.

Unfortunately, MANY with mast cell disorders have a very difficult time getting the proper testing done...this is part of the reason that suspected MCAD patients are currently in a very vulnerable & dangerous situation. The World health Organization has NOT come up with MCAD diagnostic criteria yet (it is expected VERY soon), but a new consensus proposal written by Dr. Valent gives us a preview of what that criteria will probably be:

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=328760&Ausgabe=255627&ProduktNr=224161

The problems are as follows:

-Not every hospital has the capacity to do the proper testing

-Most ER docs will refuse to do the testing once they determine you are stable. You are NOT alone. At that point, they have fulfilled their contract with you the patient. (In other words, their job isn't to help DX you).

-Following an anaphylactic episode, most patients are too sick to get to an ER or laboratory.

Compounding the problem, the way that the consensus proposal is currently written, it is NO longer enough to have elevated baseline serum tryptase, prostaglandin, D-2, etc. You MUST demonstrate a significant RISE from baseline to satisfy the proposed criteria.

SAD :(

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I hope you document and report all of that, to the clinic and the state board. Doctors take an oath to do no harm. Letting him act that way unchecked will allow him to do that to another patient. Its very shady that he tried to pretend you were never there, but his staff witnessed everything. So sorry you went through that, its hard enough dealing with being ill! I was so angry reading your post. Unbelievable.

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Maiysa, Please report this doctor as soon as you can to your local state medical board and I agree to the owner's of the clinic. The way he treated you was unprofessional at the least and may have violated the law. Who knows he may not even be a properly licensed doctor. Please check his credentials at the state board. You can use "ratemd's" to look him up. If he is listed there, at the top of the webpage is a link to the medical board he is licensed through. You may also review him at ratemds as well. As long as it is the truth, you can post a review. Read the rules of the the website though before posting.

When these things happen to us we tend to think we are the only one it is happening to. The truth is that the doctor is probably treating many this way. I can speak to this as I thought I was alone when my cardio manhandled me during an appointment. I told the rehab person what had happened and didn't officially report it, I was new to the practice and was afraid they would think I was crazy. Well 2 months later he was arrested doing it after putting in a pacemaker. After it was reported on the news 25 other women came forward, and he already had several complaints at the medical board and the office staff was aware he was a problem. We are never as alone as we think we are. Bad behaviour predicts future bad behaviour, if we don't speak up it more will be harmed.

Whats that saying the only way for evil to prospure is for good men to stand by and do nothing.

I'm so sorry this happened to you, be strong!!

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After reading all your comments, first of all thank you so much for your support. I admit at the time I was hurt and upset, but I'm getting so desensitized to silly doctors like this and I just went about my day after a few tears. I thought, I'm not going to let him ruin my day. A friend of mine actually treated me to an energy working chiropractor and the timing was right, my appointment was directly after my Urgent Care debacle and it was so relaxing. So I didn't care after that. Anyhow, you are all right, he is probably treating someone else the same way and they might not be as desensitized as I am and it will probably do them in. So I am going to report him. I kept thinking about how this doc could lose his job and I don't want to ruin the start of someone's new year, but he was out of control that's for sure and it wont' be fair for anyone else to have to deal with him. He is like a ticking time bomb and I thought.....this is silly......but what if he finds out I turned him in and goes nuts. I will have to go on the witness protection program. haha. I'm kidding....a little. Anyhow, I will call today. Yikes.

And Mack's Mom, I will look at that link. Thank you. I can't find a doc anywhere in the Nevada or California area and emailed the support group gal for southern california and the email came back. So will keep looking. Thank you for the info.

Happy New Year to Everyone! Let's hope it's a healthier one!

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To be completely honest with you Ithink this doctor had been recently sued. Especially since you say this clinic had a history of bad care I think the recent lawsuit brought out a hypersensitivity in this doctor and he took it out on you.

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What he said to you might explain my "one visit, last visit" phenomenon I've been encountering with so many doctors! They start out the first visit all interested, and by the time labs come back and the second visit is here, they're like "there's not much we can do". Over and over.

That doctor was out of line acting like that. He should have just said that they don't hunt for odd diseases, but they do stabilize acute illnesses. He just plain went over the top. There could have definitely been a better/polite way for him to handle it.

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Maiysa,

I am so glad you plan to report him. That's beyond unprofessional, and yes, if he treats others this way it could result in a worse outcome than yours. I am NOT a sue-happy person and generally give doctors the benefit of the doubt, but that is way out of line. So sorry you had to deal with that!

Worse one I ever had was an old doctor at an HMO in Arizona many years ago who told me my tachycardia would go away if I just got married and had kids. Um, I'm married and with kids and still have the same issues. I remember my mouth dropping open at the time.

Hope you get some resolution and sorry you missed that tryptase test moment - - I've got standing lab orders but never seem to have a really bad episode when the lab is open.

Carol

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As part of my degree program, I had to take a course in ethics for psychologists--who actually have even stricter guidelines than physicians. In general terms, the first major rule is "what would a reasonable person do" in that situation? And, if there is an exchange of money, they physician then does have a "duty of care" to treat you/stabilize you, etc--which explains while he returned your money in order to absolve himself of that duty. However, in my reading of the law, he was operating in an emergent care capacity--so all he needed to do was to tell you that you are stable and let you know that he cannot order the tests because his role is just to deal with the imminent emergency. Then his next step should have been to refer you back to your primary doctor. Doctor's in emergency facilities do not have a duty of care to take care of you long term--just stabilization and then referral to the proper speciality and/or admission to hospital.

Always remember that the only difference between the rest of humanity and any doctor is the amount of time spent in school. They aren't necessarily any smarter, any nicer, any better a human than the average "joe." And, they can be stupid too...as a famous american comedian says "you can't fix stupid."

Might I suggest that you consider getting a written order for the tests you need from your primary or specialist doctor? That way in your next potential crisis, you can head for the tests right away. My doctor and I had done that with order for a specific type of GI testing so that I could have it done when I'm symptomatic.

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Oh, and ditto to Mack's Mom's suggestion to report the entire incident to the director of the clinic, or to their board of directors, as well as filing a complaint the Nevada Dept. of Health/Medical Board, who would oversee the credentialing of all doctors in that state.

If it is possible that you weren't completely medically stable, that's another issue too--at that point, there IS a duty of care to treat you or transfer you to hospital ER

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Has no one else had this happen? I did with my daughter back in 2007/2008; however, it was her diagnostic doctor that did it. My daughter has had only one major reaction at the diagnostic hospital. And during this one major episode they tell us to give her medicine and go home. They refused to do any testing. Since then, we have had specialized dysautonomia doctors refuse to see her because of her reactions. Current Neuro is treating symptoms not even trying to diagnose anymore. Still waiting on Mayo.

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