Stupid/Cranky and arbitrary doctors: rant warning!

[rosie26]

Misfit Toy



I get copies of all my lab results now, as I want to know for myself where I am with all my levels and because with ME we tend to have to think and doctor ourselves with supplements etc! unfortunately, not a good situation.

 

[Misfit Toy]

Hey rosie26, I have stuff going back to 1989 when I got sick. I can't even find tests anymore. I have a copy somewhere, but which file is it in? There are several files over 24 years of having this thing.

 

[Valentijn]

Really it was nothing but a nonsense visit to the doctors for you and you had to pay for it as well ! And you didn't even get to talk of the other problems you have been having as well that have been causing you a major bother as well !!

Actually it's "free" in the Netherlands (paid for by taxes + universal health insurance). It's mostly the aggravation factor from the stupidity that gets to me

Going back in to my regular GP this time in about an hour. Hopefully that goes better! And some test results supposedly got sent out 17 days ago (via email? snail mail?) to my US doc, but he hasn't received them. So I really want to track those down today and maybe I can get a better idea of what's going on lately.

 

[rosie26]

@Valentijin

I like to hear you still laughing ha ha ! After hearing you talk of those nasty problems lately then have a doctors visit like that and you didn't even get to tell everything ! Yes it does remind me of specialist visits I have had too ( that would take a while to tell ! )
I walked out of one with just reflux tablets, a symptom that I didn't even have. ha ha

 

[Valentijn]

I walked out of one with just reflux tablets, a symptom that I didn't even have. ha ha

Yeah, I'm finding the nose spray I got to be rather amusing. My nose isn't congested or runny - just when I lay down about half a ton of snot comes out at once.

But it's an anti-inflammatory corticosteroid, so maybe it'll make at least 1% of my body less inflamed.

 

[Valentijn]

This appointment went somewhat better. My GP did listen, though she was skeptical about it being Bartonella or that it might be/become a chronic infection if it is. She did order the tests though, as well as getting ESR, CRP, and leukocytes again, and adding iron.

For the past two visits she's been making "suggestions" that thinking about symptoms too much might be causing me psychological problems. So I'm feeling pressure to get results, though I did at least defend myself, pointing out that I was having a bunch of new symptoms appearing all at once, including some serious ones. I go months at a time without going in at all, even though I've got daily muscle pains, joint pains, skin problems, throat pain, swollen lymph nodes, OI, constipation, stomach pain, etc. It took me a month of yellow mucus and then coughing up blood to go in for an infection (still not resolved). Yet there's the implication that I'm somehow becoming hysterical or obsessed with symptoms.

Oh, and now I've got visible blood in my urine for the first time. Though actually I've had traces of blood in every urine sample since I got sick 2.5 years ago. It's a fairly typical result of inflammation, which I've also had pretty much as long as I've been sick.

 

[heapsreal]

This appointment went somewhat better. My GP did listen, though she was skeptical about it being Bartonella or that it might be/become a chronic infection if it is. She did order the tests though, as well as getting ESR, CRP, and leukocytes again, and adding iron.

For the past two visits she's been making "suggestions" that thinking about symptoms too much might be causing me psychological problems. So I'm feeling pressure to get results, though I did at least defend myself, pointing out that I was having a bunch of new symptoms appearing all at once, including some serious ones. I go months at a time without going in at all, even though I've got daily muscle pains, joint pains, skin problems, throat pain, swollen lymph nodes, OI, constipation, stomach pain, etc. It took me a month of yellow mucus and then coughing up blood to go in for an infection (still not resolved). Yet there's the implication that I'm somehow becoming hysterical or obsessed with symptoms.

Oh, and now I've got visible blood in my urine for the first time. Though actually I've had traces of blood in every urine sample since I got sick 2.5 years ago. It's a fairly typical result of inflammation, which I've also had pretty much as long as I've been sick.

its almost a cover up when they cant help you and then push u into the psycho babble stuff when they dont have the answers.

 

[Misfit Toy]

Why can't doctors just say, I don't know what's going on with you? Is it about ego? That bothers me that your thinking about your symptoms might be causing you psych symptoms in their mind. What does she expect? Does she know you are in a scooter?

Doctors, aren't they a peach? I sometimes hate them.

My doctor supposably had CFS. He went to med school while having it???

He has an understanding of it and always thinks that my symptoms are real. However, he has made major mistakes, to the point of where I went to a therapist because of one HUGE mistake. I had to finally confront him and tell him how angry I was and how his treatment (a wrong diagnosis) put me in therapy.

I try to except the good with the bad, but it's wearing me down.

Valentijn, you are strong and have a good sense of humor. Sunshine on a cloudy day. : )

 

[Ema]

Someone needs to tell doctors upon graduation that they have now only had the bare minimum of learning and that they will be required to spend the next decades continuing to study if they ever hope to be a doctor worth anything. Too many of them think the learning is done the day they graduate when it couldn't be further from the truth.

Maybe a little "bartonella" tattoo? That way she could feel smart by finding the *objective* evidence!

 

[Ema]

Now I wonder if they learned these types of rubbish in medical school? Most of them should return their diplomas and go back to school immediately.

Reminds me of the old joke, "What do you call the person who graduated last in their class from medical school?"

Answer: Doctor.

 

[Valentijn]

Reminds me of the old joke, "What do you call the person who graduated last in their class from medical school?"

Answer: Doctor.

Hehe, we got that one in law school too And I was close to the bottom of my class (bottom 10 maybe?), yet many people who got better grades had to take the bar exam multiple times. It was the difference between learning ancient English legal history in class, and studying current laws and procedures for my state. They thought doing well on grades meant they didn't have to study for the real world applications, whereas I knew better and worked my ass off when it mattered.

But lawyers at least graduate knowing how little they know - or they figure it out after taking the bar exam.

 

[Misfit Toy]

I recently went to a doctor (GYN) who was about 64. She was saying to me, you are not a textbook patient, because I can't take the pill or Depo Provera. How many women can't? LOTS. And....what textbook are you talking about, the one from the 70's, or early 80's. Were you listening to Jerry Garcia back then, because he died, by the way! Lady, we've come a long way since then. Get up to snuff.

 

[Ema]

I actually asked an endocrinologist once if his unread journals were working for him as a doorstop.

Ema

 

[Shell]

Valentijn - sometimes I think the horror GPs and other docs have of mere patients using the internet to find out what the hell is happening to us, isn't because they think we'll panic and scream "SOMETHING WEIRD AND DEADLY" but because we'll come across so many posts like yours.
Wherever I go in search of answers it's the same reports from patients about being dismissed, left sicker for longer than necessary, refused treatment, and just the generally dim witted egomanics out there.

 

[Shell]

I actually asked an endocrinologist once if his unread journals were working for him as a doorstop.

Ema

LOL Ema you must have been a little irritated with him/her. What did s/he say?

 

[Misfit Toy]

Honestly, one of the reasons many of us don't get better is because of doctor's. It's not just the CDC, although that is huge. It's the fact that they don't have the time. My doctor is pretty knowledgable. He does Ketamine treatment, he is up on fecal transplants, he knows a lot. However, he doesn't have the time to go over it with me. I am given 20 minutes to talk and that's it. We usually go over two things. His head is on so many other patients, not just me and he doesn't have the ability or time, due to insurance companies, to be thorough.

I can't tell you how many times I will suggest something to my doc and he'll say, "That's a great idea, why didn't I think of that?" as he giggles. Good question. I have to be on deaths door for him to really recommend something.

And for Valentijn, the doc you saw yesterday was just DUMB. End of story. Even if she had the time, she would still be a waste of your time!

 

[Ema]

LOL Ema you must have been a little irritated with him/her. What did s/he say?

Well, his jaw dropped a little bit and he just brushed past it but the next thing out of his mouth irritated me past the point of no return and I thanked him for his time and walked out. He did have the decency not to send me a bill though which somewhat surprised me.

Then the asshole wrote an extremely condescending letter to my GP (who I stupidly put on the intake form) and so I got to read that some months later and it worked me up all over again. Thankfully my GP thought he was an idiot as well so it didn't affect our relationship.

Ema

 

[Misfit Toy]

Ema, I love that. I wish my doc's didn't charge me when i walked out, or they didn't do their homework so had nothing to report. I drove 40 minutes to that GYN I was talking about, in the pouring rain, only to be told that she didn't talk to the doctor that she needed to so she had nothing new to say. I think our appt lasted maybe 2 minutes. I was livid. She was/is a bitch.

And it's not just CFS folks. My mom hates going to docs. She always says, they know nothing. They don't. We'll die first before getting help.

I have this allergist that always makes me feel worse. So far she is good at what she does, but imagine this....she says to me every single time, after she tries to remember my name..."You are on Medicare? Well, buy yourself a coffin, because when Obamacare steps in, you will be seriously screwed!" Yes, my doctor says this to me. Who the bleep says that??

So, I leave there beyond anxious. And why do I stay with her....because she knows her stuff and believes in me. Better go get that coffin.

SCREAM.....

 

[roxie60]

Yep my Drs dont believe in CFS either, I kinda agree, I think it is a trash bin diagnosis (I'm not sure it is a diagnosis - does it have an offical code?). I think we are all very sick but I think the cause eludes Drs and ourselves. I also agree Drs dont really know that much after they are trained in school. If you present as a difficult case (one that cant be fixe by popping a pill or slapping a bandage on you) they usually just give up and a slap in the face when they tell you its all in your head. I have reached the end of my rope with Drs, I dont care anymore. Now they want me to spend hundreds on a neuropsych - why so I can be labeled depressed - I venture to say most of these type A Drs would not have lasted half as long as most of us if they had to live with these symptoms daily.....I am in such a foul mood today, I hate myself, what has happened to me, I hate that I am having a pity party (what happened to that determined woman that could overcome all obstacles), I hate the DRs who drag this out, why not tell me you have no clue, I hate the hoops I have to jump thru to get some assistance when I would much rather be well and not have to deal with any of it....

 

[Misfit Toy]

roxie60, I am so sorry and I totally understand. I feel the same way. Yesterday, out of fatigue and depression due to docs. I spent the day in bed wanting to avoid the world. Your feelings are so legitimate.

I often think what you said all of the time; not just doctor's but people who are up and their life is going on fine could never handle what we go through. They have no idea. I had a friend say to me the other day, "I can't live on $250,000 a year. Her husband took a salary cut. I wanted to smack her. How dare her say that to me. I am on SSD and Medicare with no prescription coverage.

Back to you roxie, You should not have to have a psych evaluation. Don't do it. I know this sounds silly, but do any of these docs really treat CFS? No one knows what CFS is. Can you go see Lerner...Dr. Lerner in MI? There has to be someone better, just so you don't have to put up with these negative responses. It reminds me of when I first got sick. IT was the same way. I had to jump through hoops to get these docs to believe me.

You are still a strong woman. Anyone who deals with this is. Be kind to yourself. You deserve it. Wallow for awhile...let it out.