Visit the Microscopic Colitis Foundation Website
Hello all,
One thing we seem to all have in common on this board is the experience of working with physicians who are “not on the same page” as us. I’m sure not a week goes by that someone isn’t posting on the subject and all the rest of us empathize having been there ourselves. Well, today was just such a day and I need to vent, vent, vent! So hold on to your hats because this is going to be a long rant. (Sincere apologies for the length but I just have to blow off some steam!)
For roughly the past 2 years I have posted on this board about having mastocytic enterocolitis. During that time, I have also posted about developing a constellation of symptoms which likely indicates I have mast cell issues outside of my gut. IOW, mast cell activation disorder as it is commonly known. (MCAD) Diagnosing MCAD can be a tricky process as it is an evolving science without a standardized diagnostic framework as of yet, which presents challenges to both patient and doctor alike.
Now to the worse Dr.'s appt ever… I had a follow up appointment with the allergist/immunologist who is screening me for MCAD with a variety of specialized tests. I planned on reporting to him that during the past three weeks I have been having a flare, involving itching, with and without hives as well as severe lips, mouth, throat irritation. (I have had all these symptoms during other flares.) Last Wednesday, the itching reached a point where my face was covered with hives and I ended up in the ER. A round of steroids was prescribed. The steroids reduced the hives but the mouth/throat irritation continued. I am taking 50 mg of Benadryl every 4 hours on top of zyrtec 2/x day to combat the mouth/throat irritation.
So, off to his office I go today feeling poorly but prepared to discuss the potential MCAD workup and diagnosis. I was running a little late, so I decided to take the stairs up to his office. I ran up the flight and when I got to his office door I was hit with feeling lightheaded and short of breath. I went inside the office and the symptoms got much worse. My BP spiked up to 178/90, my breathing was shallow and I started having tremors. I had this same experience back in April when I was also symptomatic during a flare. During all of this I’m operating under the assumption that this is just another part of all the mast cell issues and a shot of Benadryl and I’ll be fine. (Just like the last time I experienced these symptoms.) Well, the doctor saw it differently. Because my heart rate reached 120, he feels compelled to call 911. So, off to the ER I go. I know this was just a CYA on his part, and I can even understand it, but definitely not what I was anticipating for my appointment. Once in the ER, I ask for Benadryl and steroids, thinking we need to get the mast cells calmed down. The ER doc says sure until she talks to the allergist who tells her he doesn’t believe that I have a mast cell disorder so no steroids! OMG, are you kidding me?
Fast forward to this evening when the allergist called me at home to discuss what we should have discussed during our appointment that got interrupted by my being hauled off to the ER. I explained all my symptoms from the past three weeks as well as my belief that my running up the stairs today was just enough to trigger some type of acute episode given that I’m in a flare. (Low threshold during flares.) It becomes clear from his comments, that he believes I was having a panic attack in his office today and not anything related to a medical condition. He even suggests that my recent overuse of steroids may have caused me to be exceptionally anxious, which could have contributed to today’s “panic attack.” And if that is not enough of a slap in the face, he also makes it clear that he in fact does not believe that I have a mast cell issue, other than the one restricted to my gut. Really, are you serious?
Here are the facts: Diagnostic criteria for MCAD is under development by the leading authorities which makes diagnosis challenging. However, even with the evolving science much of what I have read states that if you have a positive biopsy (I do) and a constellation of certain symptoms (I have them) you very likely have MCAD. (There are other diagnostic parameters as well, but these are the ones that apply to my situation.) In addition, when I contacted the Chair of the Mastocytosis Society for info on ME soon after my diagnosis she responded by stating that ME is not recognized by the Medical Advisory Board members of the society because it falls under the diagnosis of MCAD. Really?…the world’s leading authorities would diagnose me with MCAD but not my local allergist.
These are the widely accepted MCAD symptoms that I have experienced in the last two years (in conjunction with a positive biopsy): nausea, D, bloating, C, malabsorbtion, headache, blood pressure irregularities, vertigo, lightheadness, hives, muscle pain, joint pain, osteopenia, cystitis, fatigue, anemia and mouth pain. (Doctor told me he had never heard of mouth pain being associated with mast cell issues even though it is listed in a recent journal article on MCAD symptoms. He referred me to an oral surgeon as he believes it to be irrelevant to mast cell problems.)
The next obvious question to ask him and I did was “so given my positive biopsy and long list of suspicious symptoms, why do you believe that I don’t have a systemic mast cell issue?” His response, “you don’t have flushing, which is the hallmark of MCAD.” OMG, OMG, OMG! He dismisses all the other symptoms I have experienced over the past two years, plus my biopsy, and makes his decision based on one solitary symptom that is not checked off on my long list of symptoms.
I told him we would have to “agree to disagree” on this one. I’m going to finish up the diagnostic workup with him and then move on. Whether I do or don’t have MCAD, it is clear to me that he simply does not have the knowledge base to deal with this issue. He was unsure about which tests to order, forgot about some of the specialized tests he ordered from Mayo, and just generally seems to be lacking in a broad based understanding of MCAD. (Not to mention he thinks I’m a nut case.) I’m not looking for a physician who automatically agrees with my assessment of the situation, but I at least have to have confidence in his understanding of systemic mast cell issues and the diagnostic process. Back to square one, I guess. Sigh……………….
Thank you for putting up with this seriously long rant. You saved my poor husband hours of having to listen to me go on and on. And for that I’m sure he thanks you!
Julie
Worse Dr.s appt ever!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow Julie!
Not only does that allergist not have the knowledge base to deal with mast cell issues, but he's obviously an idiot, to boot, if he's willing to disregard multiple indisputable markers of the disease, for a single trivial symptom. He must think that he lives in a perfect world, and everything always "goes by the book". The most troubling part of the whole ordeal, IMO, is the fact that he sent you to the ER, and then made the decision to refuse treatment. That's absolutely asinine. Even if his convoluted theory had been correct, the treatment that you asked for would not have hurt you, so why did he withhold it? Apparently he had his own twisted agenda. He most definitely is not qualified to treat someone with mast cell issues. You're very lucky that the reaction didn't become worse, because you certainly couldn't have counted on receiving any help, with him in charge.
I hope you can find an allergist who actually knows enough to be able to help you, but I'll bet it won't be easy, to say the least.
Tex
Not only does that allergist not have the knowledge base to deal with mast cell issues, but he's obviously an idiot, to boot, if he's willing to disregard multiple indisputable markers of the disease, for a single trivial symptom. He must think that he lives in a perfect world, and everything always "goes by the book". The most troubling part of the whole ordeal, IMO, is the fact that he sent you to the ER, and then made the decision to refuse treatment. That's absolutely asinine. Even if his convoluted theory had been correct, the treatment that you asked for would not have hurt you, so why did he withhold it? Apparently he had his own twisted agenda. He most definitely is not qualified to treat someone with mast cell issues. You're very lucky that the reaction didn't become worse, because you certainly couldn't have counted on receiving any help, with him in charge.
I hope you can find an allergist who actually knows enough to be able to help you, but I'll bet it won't be easy, to say the least.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
What a day you have had, Julie!
So sorry you had to endure this. If I was in your shoes, I don't know that I would "finish up the diagnostic tests" with this doctor. I'd likely find a new one. I don't suffer fulls easily.
Thank you for sharing your experience with us. It's helpful to me to learn more as I read what others have gone through.
Wishing you better days ahead,
Sharaine
So sorry you had to endure this. If I was in your shoes, I don't know that I would "finish up the diagnostic tests" with this doctor. I'd likely find a new one. I don't suffer fulls easily.
Thank you for sharing your experience with us. It's helpful to me to learn more as I read what others have gone through.
Wishing you better days ahead,
Sharaine
I doubt that I would finish up any tests with that doctor, either. If he doesn't even recognize a mast cell reaction when it's right under his nose, his advice isn't likely to be worth much. I see your point, though, that it might be convenient to finish the tests, while you're at it, but you would have to be a lot more forgiving than I am, to go back to that guy. 
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Oh Julie! What a jerk!!
All I can say is "been there, done that". After I had my flu shot reaction I saw an allergist for testing. During the test I had an episode which was written off as a panic attack. The doctor said I wasnt allergic because my BP spiked and in anaphylaxis it has to drop. I never went back. I then saw 17 more doctors before giving up and travelling to Boston. I completely understand your anger and frustration. You need a new doctor. Maybe Valerie Slee from TMS can give you a few names.
You are in a bad flare. We have all the same symptoms except I do not get hives but I do get headaches. In my recent flare I recognized the hyperadrenergic POTS connection. You have some of the symptoms. Getting off of caffeine helped. Exercise also helped but I had to do it on the floor because I couldnt tolerate standing. You need something for your BP and maybe Wellbutrin.
Be sure to carry an epi pen and the emergecy protocol from TMS. I also ordered a DVD on mast cell activation symptomology for my new cardiologist. The same info is avalable on You Tube but the DVD is an abbreviated version. If you go back to this doctor maybe you can educate him.
Hugs,
Mary Beth
All I can say is "been there, done that". After I had my flu shot reaction I saw an allergist for testing. During the test I had an episode which was written off as a panic attack. The doctor said I wasnt allergic because my BP spiked and in anaphylaxis it has to drop. I never went back. I then saw 17 more doctors before giving up and travelling to Boston. I completely understand your anger and frustration. You need a new doctor. Maybe Valerie Slee from TMS can give you a few names.
You are in a bad flare. We have all the same symptoms except I do not get hives but I do get headaches. In my recent flare I recognized the hyperadrenergic POTS connection. You have some of the symptoms. Getting off of caffeine helped. Exercise also helped but I had to do it on the floor because I couldnt tolerate standing. You need something for your BP and maybe Wellbutrin.
Be sure to carry an epi pen and the emergecy protocol from TMS. I also ordered a DVD on mast cell activation symptomology for my new cardiologist. The same info is avalable on You Tube but the DVD is an abbreviated version. If you go back to this doctor maybe you can educate him.
Hugs,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Julie,
My husband, too, has enjoyed more relief from ranting thanks to this awesome forum than he will ever know.
Don't go back. There's not one thing to recommend this doctor, who actively prevented you from getting appropriate care, based not even on poor thinking, but on his preference for being right (and having you be wrong, or not get to tell him what to do) over paying attention to what he ALREADY KNEW about you. Fortunately that arrogance and stupidity did not turn out to be life-threatening. But now you know he'll stick to his guns in the face of the facts, and that's not good for anyone's health.
Just get your records, and find someone who is competent. As you say, your doctor doesn't have to agree - I am sure you would be thrilled if you encountered a doctor whose thinking about this turned out to be better than yours. But it ain't gonna be this jackass.
You have a real case of a condition, about which the understanding is evolving. This doctor doesn't really seem into "understanding" OR "evolving" - you need someone who is.
I fervently you health and relief from this disturbing uptick in your symptoms, and some help from the medical community.
Sara
My husband, too, has enjoyed more relief from ranting thanks to this awesome forum than he will ever know.
Don't go back. There's not one thing to recommend this doctor, who actively prevented you from getting appropriate care, based not even on poor thinking, but on his preference for being right (and having you be wrong, or not get to tell him what to do) over paying attention to what he ALREADY KNEW about you. Fortunately that arrogance and stupidity did not turn out to be life-threatening. But now you know he'll stick to his guns in the face of the facts, and that's not good for anyone's health.
Just get your records, and find someone who is competent. As you say, your doctor doesn't have to agree - I am sure you would be thrilled if you encountered a doctor whose thinking about this turned out to be better than yours. But it ain't gonna be this jackass.
You have a real case of a condition, about which the understanding is evolving. This doctor doesn't really seem into "understanding" OR "evolving" - you need someone who is.
I fervently you health and relief from this disturbing uptick in your symptoms, and some help from the medical community.
Sara
You read my mind. I started to post a comment on that line of thought, but I decided against it, since I couldn't be sure what he was thinking. However, since you let the cat out of the bag, I have to say that I think you're right. That allergist was upset by Julie's obviously superior knowledge, (compared with his own), and he simply decided to show her who was the boss. It was his hospital, and he was in charge, and he wanted to make that very clear. As Mary Beth mentioned, he's a jerk, and more than that, he's a pathetic jerk, who's willing to force a patient to suffer, in order to enforce his childish mindset.Sara wrote:There's not one thing to recommend this doctor, who actively prevented you from getting appropriate care, based not even on poor thinking, but on his preference for being right (and having you be wrong, or not get to tell him what to do) over paying attention to what he ALREADY KNEW about you.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, I hope he's happy. (Um, our patient, in this case was *already* suffering... from the condition he declined to treat, and decided to undiagnose for good measure.)
Julie, if you need a break from ranting, I still have some ire left over on this topic. You just let me know. This really got my goat.
--Sara
Julie, if you need a break from ranting, I still have some ire left over on this topic. You just let me know. This really got my goat.
--Sara
Tex, Sharaine, Mary Beth, Joan & Sara,
Thank you for your words of support! It meant the world to me after the day that I had on Friday!
I've taken a few days to get some perspective on things. While I understand the allergist sending me to the ER, I still don't understand his dismissing the MCAD diagnosis. He's not well informed and apparently doesn't want to become well informed. (In such contrast to my gastro who always tells me "we're learning about mast cell disorders together.") I've debated with myself about whether to drop him altogether and take my records and run, or to try and educate him as Mary Beth suggested. On one hand if I just drop him altogether, then how have I helped the next patient that might come through with a similar presentation? Maybe I can help further his understanding. I'm not sure just yet. In general, he's not been arrogant or unapproachable, but I agree with Sara and Tex; he definitely started to "puff up" during our interactions on Friday and that type of behavior is a deal breaker.
We still have to have to discuss my test results that are pending from Mayo. That will give me one more chance to get a sense about his attitude. Having said that, I think the bottom line is that I just want the care/treatment that will help me feel better. And the reality is that going to a physician who doesn't buy into a diagnosis, isn't going to result in appropriate care. It's pretty simple.
The hives/itching seem to be well under control at this point and that is welcome news. I'm still having a terrible time with the oral burning however. It feels like my lips, mouth, throat and tongue have been peppered. Eating makes the symptoms worse. I don't get it. Is it an oral allergy issue or something else? Here's the article abstract I mentioned that describes a potential relationship between MCAD and burning mouth issues: http://www.ncbi.nlm.nih.gov/pubmed/21420635 Is that what this is? I don't know but it is miserable. Sure wish I had a doctor that was willing to help me figure it out!
Mary Beth...Yes, I have my epi and am now carrying liquid Benadryl everywhere I go. Great idea about the DVD for future appointments. My husband keeps a copy of the ER protocol as a "just in case" but you're right I need to have one with me as well. Thanks for the reminders.
I'll give you an update once I get my test results from the allergist. That should make for an interesting conversation.
Thanks again for your support! It surely did help!
Julie
Thank you for your words of support! It meant the world to me after the day that I had on Friday!
I've taken a few days to get some perspective on things. While I understand the allergist sending me to the ER, I still don't understand his dismissing the MCAD diagnosis. He's not well informed and apparently doesn't want to become well informed. (In such contrast to my gastro who always tells me "we're learning about mast cell disorders together.") I've debated with myself about whether to drop him altogether and take my records and run, or to try and educate him as Mary Beth suggested. On one hand if I just drop him altogether, then how have I helped the next patient that might come through with a similar presentation? Maybe I can help further his understanding. I'm not sure just yet. In general, he's not been arrogant or unapproachable, but I agree with Sara and Tex; he definitely started to "puff up" during our interactions on Friday and that type of behavior is a deal breaker.
We still have to have to discuss my test results that are pending from Mayo. That will give me one more chance to get a sense about his attitude. Having said that, I think the bottom line is that I just want the care/treatment that will help me feel better. And the reality is that going to a physician who doesn't buy into a diagnosis, isn't going to result in appropriate care. It's pretty simple.
The hives/itching seem to be well under control at this point and that is welcome news. I'm still having a terrible time with the oral burning however. It feels like my lips, mouth, throat and tongue have been peppered. Eating makes the symptoms worse. I don't get it. Is it an oral allergy issue or something else? Here's the article abstract I mentioned that describes a potential relationship between MCAD and burning mouth issues: http://www.ncbi.nlm.nih.gov/pubmed/21420635 Is that what this is? I don't know but it is miserable. Sure wish I had a doctor that was willing to help me figure it out!
Mary Beth...Yes, I have my epi and am now carrying liquid Benadryl everywhere I go. Great idea about the DVD for future appointments. My husband keeps a copy of the ER protocol as a "just in case" but you're right I need to have one with me as well. Thanks for the reminders.
I'll give you an update once I get my test results from the allergist. That should make for an interesting conversation.
Thanks again for your support! It surely did help!
Julie
Julie,
BMS sure sounds like a match. I'm apparently allergic to some type of meat tenderizer or flavor enhancer, or something of that sort, because I've had that happen to me a couple of times - once after eating a hamburger patty, at a local cafe, when a new cook was on duty, and once after trying some summer sausage, (at least summer sausage is what it's called around here - a type of cooked, ready-to-eat, sausage, a little less than 3 inches in diameter, in an inedible casing). Both times, my mouth began to burn like fire, a few minutes after I started eating. In my case, though, the burning subsided in about 10 or 12 hours, and disappeared completely within about 24 hours. It might have possibly been mast cell related, but it certainly wasn't anywhere near as persistent as your case.
Have you ever had your B-12 and folate levels checked? A deficiency can cause parasthesia, but rarely, a burning sensation.
It's good to hear that you're feeling better.
Tex
BMS sure sounds like a match. I'm apparently allergic to some type of meat tenderizer or flavor enhancer, or something of that sort, because I've had that happen to me a couple of times - once after eating a hamburger patty, at a local cafe, when a new cook was on duty, and once after trying some summer sausage, (at least summer sausage is what it's called around here - a type of cooked, ready-to-eat, sausage, a little less than 3 inches in diameter, in an inedible casing). Both times, my mouth began to burn like fire, a few minutes after I started eating. In my case, though, the burning subsided in about 10 or 12 hours, and disappeared completely within about 24 hours. It might have possibly been mast cell related, but it certainly wasn't anywhere near as persistent as your case.
Have you ever had your B-12 and folate levels checked? A deficiency can cause parasthesia, but rarely, a burning sensation.
It's good to hear that you're feeling better.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Julie,
Glad the phrase 'deal-breaker' is in your thoughts (of course you want your Mayo results, absolutely), whatever you decide in the end.
I have rare, occasional and short-lived mouth-burning moments, and cannot imagine what you're dealing with. Even a brief episode is no fun at all. (My last one was with a two-ingredient Larabar... both known to be 'safe' to me, and neither ingredient is in my diet at the moment. Damn.)
Liquid Benadryl may be the crowning achievement of civilization. I'm so glad to hear your hives/itching are getting under control. Hope you get some relief from the burning mouth, too.
Now that I'm calmer... maybe if this allergist comes around, he can help you. I think you'll know right away, and your decision will be clear. Either way - I hope you get some help, even if you also need another allergist!
All my best,
Sara
Glad the phrase 'deal-breaker' is in your thoughts (of course you want your Mayo results, absolutely), whatever you decide in the end.
I have rare, occasional and short-lived mouth-burning moments, and cannot imagine what you're dealing with. Even a brief episode is no fun at all. (My last one was with a two-ingredient Larabar... both known to be 'safe' to me, and neither ingredient is in my diet at the moment. Damn.)
Liquid Benadryl may be the crowning achievement of civilization. I'm so glad to hear your hives/itching are getting under control. Hope you get some relief from the burning mouth, too.
Now that I'm calmer... maybe if this allergist comes around, he can help you. I think you'll know right away, and your decision will be clear. Either way - I hope you get some help, even if you also need another allergist!
All my best,
Sara
Julie,
I've never had burning mouth pain but my sister gets it. Do you ever visit the TMS Yahoo support group? They may have some suggestions for you. Have you thought about doing MRT? It might be helpful to fine tune your diet. I am guessing you are already quite restricted.
The DVD from TMS is an abbreviated version of these 3 You Tube videos. You could give him this info in the hopes that he will at least view it and it could help some future patient.
http://www.youtube.com/watch?v=zaPo0r37wEc
http://www.youtube.com/watch?v=w0ORhV9J5xU
http://www.youtube.com/watch?v=ME979bUD1J8&feature=fvst
I see my new allergist tomorrow. I am hopeful that he will be OK since Dr. Castells referred me to him. My cardiologist appt got changed to next month.
Mary Beth
I've never had burning mouth pain but my sister gets it. Do you ever visit the TMS Yahoo support group? They may have some suggestions for you. Have you thought about doing MRT? It might be helpful to fine tune your diet. I am guessing you are already quite restricted.
The DVD from TMS is an abbreviated version of these 3 You Tube videos. You could give him this info in the hopes that he will at least view it and it could help some future patient.
http://www.youtube.com/watch?v=zaPo0r37wEc
http://www.youtube.com/watch?v=w0ORhV9J5xU
http://www.youtube.com/watch?v=ME979bUD1J8&feature=fvst
I see my new allergist tomorrow. I am hopeful that he will be OK since Dr. Castells referred me to him. My cardiologist appt got changed to next month.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Postscript to last week's events;
Saw my oral surgeon today for the consult that the allergist insisted was necessary for the mouth burning issues. I've had this same oral surgeon for 10+ years and he knows all about my history with weird allergic responses and such. He listened carefully to a quick summary of my current health issues as well as my complaint about the horrendous mouth burning. (Which has been better thanks to extreme dietary restrictions. Think white and bland!)
His thoughts on the oral burning...a mast cell issue of some sort. (He sees no indications of anything else.) He went into an explanation about the half life of mast cells which he believes reflects the cyclical two week duration of oral symptoms I've been experiencing. Then he talked about systemic mast cell issues as they relate to "hyper-reactive" patients he sees and how this is now being more widely recognized, though long present in the professional literature.
Wow, what a difference a few days can make! From an uninformed allergist last week to an oral surgeon today who is on the cutting edge of understanding how mast cells cause systemic issues.
What a crazy journey this is...
Julie
Saw my oral surgeon today for the consult that the allergist insisted was necessary for the mouth burning issues. I've had this same oral surgeon for 10+ years and he knows all about my history with weird allergic responses and such. He listened carefully to a quick summary of my current health issues as well as my complaint about the horrendous mouth burning. (Which has been better thanks to extreme dietary restrictions. Think white and bland!)
His thoughts on the oral burning...a mast cell issue of some sort. (He sees no indications of anything else.) He went into an explanation about the half life of mast cells which he believes reflects the cyclical two week duration of oral symptoms I've been experiencing. Then he talked about systemic mast cell issues as they relate to "hyper-reactive" patients he sees and how this is now being more widely recognized, though long present in the professional literature.
Wow, what a difference a few days can make! From an uninformed allergist last week to an oral surgeon today who is on the cutting edge of understanding how mast cells cause systemic issues.
What a crazy journey this is...
Julie