The "Difficult" Patient

Gloria · Post by **Gloria** » Thu Jan 06, 2011 11:43 am

Robbie,

It's helpful, but not necessary to have the stain done to detect mast cells before you treat it. My GI wanted to do another colonoscopy to look for mast cells. I refused to do it. I had all of the food intolerances which indicated a mast cell problem, plus I had mouth sores. That was enough to convince me that I had a problem.

I decided to treat myself, and eliminated all the foods high in histamines. It's also possible to purchase OTC H1 histamine blockers, such as Zyrtec. I have Zyrtec on hand, but don't take it on a regular basis, but some here do.

You might want to try eliminating foods high in histamines and possibly take Zyrtec. If your symptoms improve, then you've resolved the problems on your own. You have nothing lose and possibly could gain better health.

Here is a link to a list of foods high in histamines: http://www.urticaria.thunderworksinc.co ... restricted

Gloria

mbeezie · Post by **mbeezie** » Thu Jan 06, 2011 3:50 pm

Joanna,

Thanks for posting that link - I found it very interesting and believe that it's true.

Robbie,

I certainly understand your frustration about getting a doc to listen about the mast cell stain. I had the same expereince. I finally had the mast cell stain and it was normal, but we now know that we can have a normal number of mast cells and still have issues. I agree with what Gloria said.

I think this group is replete with difficult patients. If we were compliant with what our doctors said we wouldn't have been searching for our own answers and stumble upon this wonderful forum.

Mary Beth

grannyh · Post by **grannyh** » Thu Jan 06, 2011 3:52 pm

Maybe a good subtitle for this forum should be "Difficult Patients Anonymous"..LOL
grannyh

Celie · Post by **Celie** » Thu Jan 06, 2011 7:13 pm

Grannyh,

I love your sense of humor. You are so right!

Celie

hoosier1 · Post by **hoosier1** » Thu Jan 06, 2011 8:13 pm

Some of my former doctors told me I researched my condition too much. I sure wish they had done the same. Difficult patient... please.

Zizzle · Post by **Zizzle** » Thu Jan 06, 2011 8:49 pm

I love how doctors get upset when they hear you've been researching your condition ON THE INTERNET.

They truly believe that ALL information on the internet is misinformation. So I have to defend myself saying I am a public health researcher and know where to look for accurate, reliable information. I beleive the internet is the best thing that happened to patients. Everyone should thoroughly research any diagnosis or drug before following "doctor's orders." Hell, I'll be in the hospital, on my death bed someday, looking up meds and procedures on my I-Phone!!!

Post by **tex** » Thu Jan 06, 2011 9:06 pm

Another definition of a "difficult patient" is "a patient who knows more about treating their own health issues, than their doctors" know.

In fact, that category of patients probably includes the most difficult patients ever encountered by those doctors who tend to be so irritated by "difficult patients".

Tex

Robbie · Post by **Robbie** » Thu Jan 06, 2011 9:50 pm

Tex, you hit the nail on the head. I have had more than my fair share of jerks disguised as doctors. The yelling thing is just weird to me. She was the second one to do so. The first being the physiatrist who, after I expressed to him that the most recent trial of antidepressants he had put me on for Fibromyalgia were not only not working but were making me worse, threw his hands in the air and yelled "I don't know why I try to help you people!" as he walked out the door. And I'm not a difficult person. Yes, I'm "hard" as my current doctor puts it. I don't respond to traditional therapies - most medications make me sick. When the scope doctor comes up with UC, she says LC, the pathologist says mild, chronic colitis with a possibility of LC, and the big city GI doc says IBS and not colitis of any kind and hey, don't worry about that blood, well, yeah, I'm "hard", but so are they. I don't fit into any category and my primary doc does not know what to do with me. She is very concerned about the bleeding, as am I. And that's it - she is concerned and it shows. That's worth a bunch to me. However, I'd feel a tiny bit better about the situation if I was not paying a ton of money to be sent around in circles. I am so thankful I have this forum, or I'd be more lost than I am......

Tylenol #3 was my main medicine for migraines for years, IF I could keep it down long enough for it to work. And I am like you - if I can get to it ASAP I have a fighting chance. But sometimes not even my current best medicine will prevent the thing from turning into a full-on "close all the drapes, put the blackout curtain up in the bathroom, go to bed and feel like I'm going to die migraine". Anyway, I knew someone that used migraine medicine and wanted to try it. I had no idea she was a migraine sufferer and had studied migraines. I had been seeing her to get established with a new primary doctor in a new town, mainly to check my thyroid and prescribe my Synthroid, and anything else that came up. I just wish she'd have been willing to help and give me the medicine because there were plenty of times it would have helped between that visit and the time I was finally given a prescription and found out how helpful it was to me (one of the few medications that does me more good than harm). Strange thing is, I have all of her chart notes and everything she wrote was favorable towards me. But, for some reason, she went off on me and refused the treatment. Seems very odd to me to this day.

grannyh · Post by **grannyh** » Thu Jan 06, 2011 10:01 pm

I took the phenargan and tylenol 3 at the same time.. to hit the pain and stop the throwing up.. which kept the tylenol down:)
grannyh

Robbie · Post by **Robbie** » Thu Jan 06, 2011 10:26 pm

Gloria, I'm okay with not getting the stain for the reasons you stated - I can do fine on my own as long as I have you guys. What happened was my doctor put me on Zyrtec and Ranitidine right after I was scoped (after being put on Asacol), which I put in my intro post. Several people asked if I'd had a mast cells stain since I was being treated for it (and because of other symptoms - random high blood pressure, and I think because of the bleeding). My doctor was out of town for two weeks so I called the lab to find out if they could do it. I was put on hold and the pathologist came on the line (not who I was expecting to talk to) and said they don't "normally do that", but he would order the stuff to do it if my doctor ordered it. She agreed, tried to order it and another pathologist handled her call. That doctor actually went off on my doctor, stating nobody from their office spoke to me because they don't talk to patients, and that they would never do it because the insurance company would not cover it. My doctor was so upset by the conversation (I happened to be there when she got the call back - she was visibly shaken) she became frustrated and suggested I simply have the big city GI doc order it since I was going to see him soon. I did - he refused - said it was not called for.

I saw her a couple of weeks ago and she had more to say about it. The story got around the hospital and she got a call from two other doctors asking her for details about what they had heard. Turns out they both have had problems with this particular pathologist and they are all trying to figure out how she can be fired because they can't stand her. Yet I'm caught in the middle of it because I did not get the stain. I was trying to get it done before the end of the year when my $5,000 satisfied deductible expired. Oh well........

Thanks for the link. I might not be able to control the crazy doctors but I can control my diet

Robbie · Post by **Robbie** » Thu Jan 06, 2011 10:39 pm

Mary Beth, I guess being a take-charge kind of person is not what the average doctor wants to deal with. Tough - that's how I roll. Just like everyone else on this forum! I can't imagine being any other way, can you?

I did not know the numbers can be normal in spite of having a problem, but that's the case with other tests so I'm not surprised.

MBombardier · Post by **MBombardier** » Thu Jan 06, 2011 10:40 pm

Zizzle, I have gotten the "Oh, I suppose you've been reading all about it on the internet" slam before. When I go into my GI on Tuesday, I am taking printouts that say things like "Journal of the American Gastroenterological Society" on them. It will be hard to pooh-pooh items like that.

Robbie · Post by **Robbie** » Thu Jan 06, 2011 10:58 pm

My local doctor had me wait for her to print some IBS info off her favorite IBS site before I left after my first visit to her last summer so I never hesitated to share my research info with her. Of course, she is one of the few down to earth doctors I've been to in my lifetime. And she doesn't yell at me - what a concept

Bifcus16 · Post by **Bifcus16** » Thu Jan 06, 2011 11:01 pm

I sympathise with those having trouble with their docs. That isn't nice.

My Immuno, Haemo and GP all tell me I am difficult - that they don't know what to do with me. I don't fit the standard diagnosis/treatment categories. However, each of them has said it is important that I find out as much as possible about my conditions and take an active role in managing them, as it is important I don't fall between the cracks in the system.

On my second visit with the immuno (the 'yes there was something in the tests' visit), she pulled up Google on her screen and showed me suggested search terms!

Guess I am just lucky sometimes. There are good docs out there. If you haven't found one, don't give up hope yet.

Lyn

Robbie · Post by **Robbie** » Thu Jan 06, 2011 11:20 pm

grannyh, I never knew about the phenergan then and only took Tylenol #3 because I had it on hand. I was being treated by my gynecologist because I had such severe headaches, but even he never suggested anything else. I think he prescribed another pain medicine that did not touch it. This was 30 years ago, so I'm a bit rusty, LOL. He did insist I see a neurologist because he thought I was too young (23) to have so many headaches and migraines (and fainting and dizziness), so he tried to help by sending me on. Even though I walked away with a diagnosis of epilepsy I never got any relief for the migraines (or fainting, etc.). So, I just learned to live with it as best I could and tried to stay out of the emergency room. Then I heard of Imitrex for migraines and thought it was worth a try. Now I use the sublingual kind (Maxalt) and it kicks in quickly (if it's going to work at all). Wish I'd have known about the phenergan back in the day.