View Full Version : Why do you think you have lupus?
05-23-2013, 07:58 AM
That was the question the pulmonologist asked me the other day. I'm not kidding. The backstory: I've posted about my pneumonia not fun. Well last week I met with my regular pulmonoligist for a followup and the bad news is that nothing has changed so I'll be having a lung biopsy tomorrow. I had to meet with a different pulmonologist this week who will be doing the biopsy. This guy looked over my charts ( a very thick chart at that) and flat out asked me "why do you think you have lupus?" EXCUSE ME????? It was soooo hard for me not to give a smartalek reply. Instead I told him that I THINK I have it because the rheumatologist told me I have it and if I really don't have it, then someone has some serious explaining to do!
WHY DO I THINK I HAVE LUPUS?!?!?!? What kind of question is that??? It's in my charts for pete's sake! I don't just go around claiming to have diseases I really don't have!
It went downhill from there. The pneumonia or whatever it is going on in my lungs has not improved AT ALL. Doc asks me if I smoke. NO! Ever smoke? NEVER! Are you sure? Come again? I've gotten into trouble because I'm an antismoker and I don't mind telling people to put their d#@* cigarettes out. I don't appreciate him not trusting that I was telling the truth. I told him that I did grow up with a carton and 1/2 a week smoker but I moved out over 25 years ago. 2 years ago, my chest xray was clear so whatever is going on has been recent.
Keep your fingers crossed for me that the biopsy doesn't bring bad news. I'm supposed to get the results early next week.
I am sorry you had this experience with the pulmonoligist. I hoe you receive good news from your biopsy.
05-23-2013, 08:59 AM
What an idiot. You should have educated him by telling him, that not just cigarette smoke is to blame for lung problems. There are hundreds of reasons and the environment is one of the reasons.
I am crossing my fingers, for your biopsy.
I had that exact same question asked of me by a new rheumo a couple of years ago. He was one of the most arrogant and obtuse rheumo's I'd ever met.
Why do you think you have Lupus?
I turned around and asked him why he think's he a competent Rheumotologist.
I had to go on and explain to him the difference between thinking and knowing. I don't think I have Lupus, I know I have Lupus you frakking nitwit, and if you had taken 5 lousy minutes out of your busy schedule to look at my medical records sitting right there in front of you, you would know this too.
He just looked at me dumfounded. It did not get any better, and after suggesting that his medical license came out of a box of crackerjacks and asking if his mother had any children that lived, I walked out.
A couple of weeks later, I saw one of the nurses who was in the office that day, and she said the whole office heard my little tirade, and they were laughing and loving every bit of it. Apparently he was disliked by both his patients, as well as his staff.
He was gone not long after, moved on to greener pastures I guess.
Anyway, good luck with the biopsy, I hope you get get good results.
05-23-2013, 01:37 PM
LOL - answer that with "Why do you think you're qualified to question the diagnosis?"
What a turd....
05-24-2013, 08:52 AM
your animal character at the moment is rabid pit bull............ maybe we should have unleased you (just kidding as you know). although I do love robs response. I will be thinking of you over the next week..... hope you get answers that are repairable.
05-26-2013, 12:11 PM
I've heard THAT ONE before! More than ONCE! I can relate unfortunately! SORRY YOU have to go through it too! One of my Drs actually said "so, WHY do you THINK the sun "bothers" you?" WOW, REALLY!!!! As I sat there FLARING rashes and ALL!!!! I should have thrown up on him!! LOL If Im in the sun too long i vomit, so I should have stood outside a little longer before going into his office!
05-26-2013, 03:18 PM
I heard that from my rheumy the 3rd visit. I said look at my history then tell me I don't. She never questioned her diagnosis after that.
06-03-2013, 09:40 AM
My ex-GP would ask me, "To what do you attribute your symptoms?" Drove me crazy! Thankfully, he finally sent me to a neurologist who didn't ask me to diagnose myself.
06-07-2013, 02:21 PM
Many years ago, when my dreaded illness began, I went to a rheumatologist in TN looking for answers. I took a long list of symptoms documented with dates attached, sort of a sick journal. This young rheumatologist looked at my hands and said, you don't have anything. Maybe Fibromyalgia. I saw him take the list back and watched him as he looked at it and laughed with a nurse. Ummm..okay. That response was devastating. As time went on I was suffering from horrible flu like fatigue, dry morning coughs, pain in my hand joints during weather changes, foot pain and lung pain. I finally found a good rheumatologist, but she says I only have RA. I'm sure I have something more. My lab work only reflects high CRP but something just isn't right. I was on Plaquenil for 4 months. During the 3rd month my hair started falling out. Is this normal? I also just had a baby 5 months ago. My rheumy thinks my hair falling out is hormonal since I also had started an new BCP around that time. She says my dry cough isn't related to my RA and neither is my lung pain. I don't know what to do. Has anyone else had this experience? Does Plaquenil cause hair loss??? I'm so lost and depressed. I feel your pain with this pulmonologist. They think if your symptoms don't fit their expectations, they just write you off. It is exhausting being ignored and treated as an ignorant idiot. We know more about lupus and rheumatoid arthritis than most doctors! Why? Because we want to be well and we research research research! Doctors have so many patients they don't have time to do this. I guess we just have to keep being our own advocate....good luck. And if anyone has any answers about my symptoms or hair loss, please share!
06-08-2013, 04:01 AM
I completely understand. I had a similar list I presented and the doc just sneered at me and said it was all normal. I had had too many babies in too few years and that I should eat more protein and rest better. I was devastated, I didn't go to a doctor for years. Then suddenly my vasculitis went nuts on my feet and legs and I panicked and begged for a different referral.
We really do have to be our own advocates. I hate feeling like every time I talk about lupus I have to defend myself as well. People don't understand. Sometimes you have to take ALL the symptoms seriously and search yourself for every single sign. I still feel like I'm just making a fuss, most of this I deal with privately and then share the 'edited' version of what I find.