View Full Version : Surprisingly little information on this disease outside of forums

02-09-2011, 08:08 PM
When I first was diagnosed with Lupus, I immediately went to the internet and started reading. I wasn't satisfied with that information so I called my doctor and asked for more info. I ended up with the nurse practioner who spent about ten minutes with me, knew nothing about the medication and less about Lupus and told me to come back next week and talk to the rheum dr. All I got out of that is that your organs can get attacked. A week later I was in the ER with chest pains and blood clots in my lungs. I went back to my rheum and wanted to make sure I was treating the disease at full power. We didn't change anything and I got the feeling that she felt I was wasting her time.

Fortunately, I found this website. I've asked tons of questions and am dealing with the "does she have/doesn't she have it" due to my changing ANA numbers. Thanks to you guys I know that often one doctor adamently disagrees with another. I'm learning what to watch for and I've learned to celebrate any day that I'm functional.

In the past week I thought to myself, "hey, maybe I just didn't research enough," so back to the Lupus websites I went. Guess what? Aside from broad symptoms (few, broad symptoms) and an overview that a high school student would turn in at the last minute, it's useless! My mom went out and immediately checked out a book at the library and was quickly much more informed than I was. I can tell my pcp has studied it because when I question him, he gives me thorough and genuine information. But between the web and my rheum, I'm totally disappointed! This is such a serious disease and there are so many symptoms that many of us have and if we knew others had them, we wouldn't feel so alone.

By the way, after reading many references to sjoerns and suspecting I might have it for a very long time, I decided to read up on it. I'm the poster child! I didn't know it had to do with swallowing and many gasto issues. How my doctors missed this for the past several years since I have seen many doctors over these symptoms. Always fibro. I swear I could have an ax in my head and they would tell me it was fibro.

Anyway, had to vent but also thank all of you and your contributions. You have helped me through the absolute toughest time in my life and made me understand that I'm not alone, I probably won't die tomorrow, and even though it's long distance and purely spiritual, we still get to hold hands through the tough times. Thanks!

02-09-2011, 09:30 PM
I cannot for the life of me understand why there is such a total void of general understanding of Lupus amongst those who should know the most about the disease. I wrote in an earlier thread here about my own former profession and of how a good understanding of the state of the art along with an open mind, and an obligation to learn every day about a new technique or method that can add to overall safety, was and is absolutely essential.

I honestly believe that many, if not most of our members here, know far more about autoimmune disorders than any PCP does, and possibly more than many Rheumotologists do. The facts are out there, and they are not difficult to find. But it seems like many of our doctors and specialists simply chose at some point to stop learning and adding to their base of knowledge. It's like they think that the usual bread and butter ailments will pay the bills, and screw trying to treat anything more serious than seasonal colds and sprained ankles. To me, this wreaks of laziness, complacency, and willful ignorance-three things I hate almost as much as Lupus itself.


02-10-2011, 05:22 AM
I totally agree with you guys.
First of all I have to say I had to really laugh about the ax in the head, too funny. But sadly true.
When I told my rheumy about the brain fog that I am having almost daily, his answer was, it could be, he mentioned three different things, like low vit-D, thyroid, bla,bla,bla. And I said, why does almost every lupus patient has it, if it is not related to lupus and he just looked at me like an idiot. He didn't have an answer, so I told him that he should go onto a lupus forum and start reading. I told him that he could learn alot. I am sure he didn't appreciate it. Oh well.
I feel this doctors learn the basics and after that they think that they know it all. Like Rob said, it is pure ignorance.


02-10-2011, 10:57 AM
When i was first diagnosised i did not know anything about this or anyone who had it i came across this website by accident and i thank God i did. Everyone is so hekpfull and listenes to you and tries to help. bonita

02-10-2011, 06:47 PM
Rob - you state things exactly how I feel it! Sometimes you really want to go toe to toe with these doctors and spell out exactly how they're ignorance is affecting our lives! Today I walked into the kitchen and suddenly wasn't sure I was going to make it. My balance and strength went out -- am I beginning a fight with MS (my original diagnosis but since I didn't have lesions, it was ruled out) or is this another symptom of Lupus? This is far from the first time this has happened and I'm glad I have a big, strong son who I force to stay close in stores for just such occasions. Later today I slipped outside and since I'm on blood thinners, I look like a toddler who went crazy with a box of bandaids. I bleed profusely but can't stop the blood thinners because I'm prone to blood clots. Again -- is this all on the "educational" websites? Hell no! Why, because it will frighten us? Guess what, we're all scared to death anyway and if we know what to look for, at least the surprise factor is gone.

I guess we'll all keep comparing notes and leaning on each other. Thank God we have the internet. Just think what people went through before!

02-12-2011, 04:49 PM
In my opinion, the main reason why there is so little on SLE and other certain diseases (like Rob's multiple sclerosis) is becaue medicine is an "art", and is "practiced", and because they don't really understand "why" on a lot of this stuff. No one (for the most part) writes about what they don't know. It's sort of like when I was in my higher education years, and I discovered that mathmatics was just all "theory", the problem with it all is that man cannot "prove" anything. Does 2 plus 2 *really* equal 4? Only God understands it all, and man is less than an ant when it comes to understanding certain aspects of human "science".... "Wow man, metaphysical even, dude"...