View Full Version : Being Un-diagnosed

09-23-2008, 04:38 AM
Ok, time for a rant.

Yesterday I visited a new Rheumotologist after waiting almost 4 months to get in. I was encouraged because of the fact that I had to fill out a fairly extensive 3 page "journal" of sorts talking about my various daily symptoms and problems. The lady on the phone told me to make sure I had it done, and bring it with me.

Well, I get there for my 11:00 appt, I don't get in until 12:30. I introduce myself to the Dr. He looks at my papers that I spent considerable time on filling out, and promptly puts them in a drawer. He doesn't even read any of it. He then asks me the question- "Are you sure you have Lupus?" I ask him what he means. He says what makes you think you have Lupus. Gee, maybe it's the 3 separate doctors who diagnosed me. Or maybe it's the money Social Security Disability sends me every month because I HAVE LUPUS AND CANNOT WORK. Not to mention the rather thorough exam and 4th doctor I had to see to get disability, who called me a "textbook" case if there even is such a thing. Or maybe it's the fog, joint pain, rash, fatigue, and constant pain. Or maybe it's the fact that I lost everything I worked so hard to have. My dream of my own business, my fiancee leaving me for someone who "won't be dead in a couple of years".

Well, I don't like to be rude in public, or make a scene. That didn't matter yesterday. I stand up, and ask this guy what the "bleep" is his problem? I went off on this so called Dr. big time. He starts telling me to calm down blah blah blah. I ask him where he is going with this stupid question. He then says it's unusual for a man to have Lupus. Well, no kidding! Really? Gee, I didn't know that Sherlock. So I ask if he's frigging kidding me. I must have scared him because he backed away from me. I say a few choice words about his intelligence, and the validity of all those fancy certificates on the wall saying he's a rheumo, then I leave.

What is it with all these Rheumotologists who want to un-diagnose us? I really don't get it. I have been dealing with SLE since 2004, and most likely had it for years before that. My mother was diagnosed with SLE about ten years ago. You know, Uncle Sam does not just hand out full disability benefits to people who are not disabled. What is wrong with these so called health professionals? Am I missing something? It just makes no sense. Luckily, I see a neurologist for my MS related problems who is really a great guy. I called him yesterday, and he's going to refer me to a Rheumo who is pretty far away, but that he knows personally, and trusts. I'll make the drive, that's no problem at all. He is also going to look into this quack Rheumo I saw yesterday. Something isn't right with this guy. Anyway, thanks for letting me rant for a bit. I feel a little better now.


09-23-2008, 06:36 AM
My god it really sounds like you are getting no were fast.
People either want to un diagnoise you or tell you its all in the mind i no personally i am sick of heraing that .
Hope you have more luck with your new chap.

09-23-2008, 08:24 AM
Dear Rob,

My Dad was diagnosed with Lupus back in the 1950's when most Drs. didn't even know what Lupus was. It may be rare for men to have Lupus but they get it too.

Before I ever got diagnosed with it, the Drs. would call me a hypochondriac. It made me feel bad when they would say such things, but I knew I wasn't a hypochondriac because I had actual physical symptoms and the Drs. would have to prescribe medication for those physical maladies. I knew it wasn't in my head and I never bought into their bull.

Continue to hold your head up high, Rob. I am glad this particular doctor is going to be looked into for his insensitive and "quack" manner of doctoring.

09-23-2008, 08:55 AM
The really frustrating part of this is the fact that I am not seeking a diagnosis, I have already been diagnosed by four separate Dr./Rheumo's. My days of frustration and being told it's all in my head ended in 2004. I am not going back to that, no way, no how. It makes no sense to be treated as if I have not been diagnosed already. I hand carried my records to the rheumotologist office well before the appointment so the info was all right there for the new rheumo to read, which he obviously did not do. Grrrrr!

09-23-2008, 09:31 AM
Hi Rob,
I am sorry to hear that that stupid doctor or pretend doctor treated you like that. I sure know how it feels to be treated like that big time. It is pretty bad that there are so many doctors out there that act like this to us folks that have Lupus. It seems like a lot of them are totally ignorant and darn that has to change big time. I am glad that you told that fool off and I am glad that you are going to see another doctor and maybe this other doctor will be a lot better and a lot more compassionate towards you and any other patient that he sees.


sick n tired
09-23-2008, 11:03 AM
Hey Rob,

What an idiot!! :roll: and with you at that...you have more symptoms than Carter has liver pills. :wink: I have had idiots, too but yours takes the cake. I wish that I had gone off the last guy who told me he liked to refer to my problem as "crazy woman's disease" but I just sat there and glared. I think that you handled it better...btw...I had already been diagnosed before that clown, too.

I hope that the new rheumy is better...

09-23-2008, 11:08 AM
Why does it seem like all Rheumys suck? Is it a requirement for the degree?Are they required to question everything even when they have results right in front of their faces?On the paperwork, I have never seen them read it, They just ask you the same things again. Why did i fill out these papers if you are not going to read them. Is it part of the job to look at people who are obviously in pain like they are crazy? Even when all bloodwork points to abnormalities. I even had a biopsy before my official diagnosis that showed signs of an autoimmune disorder. I had a 945 appointmen didnt get called back until 245 no room until 315 and no doctor until 430. I had to send someone from across town to pick up my baby. Then they point to a sign that says wait times can be u to 6 hours! Are you freaking serious? Because of the so called personal attention they must give each patient. My first four visits consisted of the same questions and the same promises of ordering tests that never happen. Noone has ever touched me, nor have they taken a closer look at me. One even asked me why I was standing the way I was. I have another appointment on the 15th hopefullyI wont be too tired to to speak up for myself this time. Sorry I went overboard I just had to get that out. @ Rob Hope your new rheumy works out. Glad you told the other about himself. Maybe theres no section in their courses that teach them about lupus and how to deal with patients respectfully

09-23-2008, 01:52 PM
hugsss Rob :( you have your own stink face....

I dont even care if I ever see my idget again. Hugs buddy, hope the new one works out well.

09-23-2008, 02:18 PM
First let me say "GOOD FOR YOU!!" As you know, I am ALL for putting arrogant, ignorant doctor's in their place and letting them know that WE ARE NOT STUPID, SO HOW DARE THEY TREAT US AS IF WE ARE?????
Now, had he taken the time to at least glance at the paperwork that you had so diligently completed (where I'm sure that you stated that you'd been diagnosed by more than one doctor, etc.), he might have found an answer to his own stupid question.
I think that many doctors just assume that we know nothing and/or that we invent SH@#! As DrinkofWater mentioned, just because women with Lupus outnumber men with Lupus, does not mean that MEN DON'T GET LUPUS! They do and when they do, their lupus is generally much more aggressive than women's Lupus. So, it would seem to me that if a man tells a doctor that he's been diagnosed with Lupus, the doctor's first thought would be that this man's symptoms are probably pretty serious and he needs to do what he can to help..........not question the intelligence of that man!
I'm glad that you are being referred to another rheumy and that you are not going to let this doctor's behavior slide. So, I applaud you and say, again, GOOD FOR YOU!!!

Peace and Blessings

09-26-2008, 01:51 PM
Well, well, well,

Guess what everyone. The sorry excuse for a Rheumotologist that wasted my time and angered me so, has moved on. He is no longer practicing here in the state of Maine. I don't know the whole story, but it would seem I wasn't the only patient to have a problem with this idiot. Also, a friend of mine at the Attorney Generals Office mentioned that this person is also being investigated for fraud in regards to some shady real-estate deals as well. For a person like a Dr. whom you need to be able to trust, commiting a crime like this is unacceptable to me whether it had anything to do with his medical practice or not.

I really don't like having to confront people like I did with this guy. And I'm not one to use my physical size to intimidate people either, it's just not me. But, after getting this news, and reading everyone's support of how I handled this guy, I don't feel bad one bit. My Neurologist set me up with a rheumo he knows and trusts, and I have an appt. with him in 6 weeks. Not a bad wait at all. It's a bit of a drive, but I don't care. If he's good, the distance will not matter in the end. Thanks again everyone.


09-26-2008, 02:16 PM
Wow...I am glad you gave him heII. Fled in four days.... Did he run screaming, Rob?

Maybe you ought to post his name, so in case he moves into one of our towns, city, state....we know who to avoid and report...

Sorry you had to experience such a dolt...


Pretti in Pink
09-27-2008, 07:06 AM

Let me apologize for the insensitivity and mediocricy of this simple minded individual. We'll hope for a different result with the new doctor.

09-27-2008, 10:37 AM
Oluwa, I considered posting his name, but the chances of him practicing anywhere, are pretty much nil. He won't be leaving the state anytime soon either. I guess the state medical review board has been getting complaints from patients for months now, and I caught him on the tail end of things. The only medical job he could get now would be mopping the floors in the prison infirmary. Without getting into the details, let's just say he's in deep you know what with the state for his fraudulent real estate dealings. He's finished.

09-27-2008, 11:55 AM
Yikes, Rob....sorry I missed this post earlier. Your experience would be unbelieveable if we all hadn't read so many posts here about insensitive, dumb-a@@ rheumatologists. However...this guy gets the award for the dumbest-a@@, most insensitive of all. :mad:

You have every right to be proud of your reaction - you struck a blow for every person with chronic illness who is 'pooh-poohed' by a member of the medical establishment (or an employer...or a 'friend'....or a family member.....and on and on.)

Your post scares me a little. I see a new rheumatologist on Oct. 1st (I loved my old doctor - she's now in France...sheesh.) The new rheumy has a good reputation. But, I do know at least one person who has been trying for a couple of years to get a firm diagnosis from this doctor, and she's had no luck...and no treatment. To be fair, there are others in my local support group who've seen this doctor and are happy with her. But, I'm still pretty nervous. What if she tries to "un-diagnose" me? Can I borrow some of your 'attitude', Rob? :shock:


09-27-2008, 01:19 PM
Wow rob,

Glad to hear that idget's behavior caught up with him...wonder where he'll slink off too.

Snakes like that just shed one skin and grow another. I'm very proud of how you handled yourself.

So many of us let self doubt stand in the way.

Last thing in the world you needed was to run into a stink face like that.