Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

I feel like my doctor has Multiple personalities

Posted by on Nov. 9, 2011 at 10:27 AM
  • 4 Replies

A couple years ago, I was diagnosed with SLE (systemic lupus). I chose to get a second opinion, and was referred to an out of town specialist, who changed my diagnosis to fibromyalgia (without running any tests). Then, after finally finding a primary doctor in town, I found out I have some serious kidney problems, and my joint pain and other symptoms have worsened. My doctor has been saying "no it's not lupus, it's fibro" for a year now, and then last week, he said he wanted to run some more tests, based on my current symptoms and kidney problems. I waited a week, and the nurse finally called with my results. She had this tone in her voice, so i knew it wasn't great news, and she said the doctor wanted me to see another rheumatologist as soon as possible. I asked her what the doctor thought might be the problem. "Well, it's lupus" she said. I didn't say anything for a minute because all I could think of was "make up your mind and let me get used to dealing with it!" So here I go again, back to the lupus thing. I just feel like...it's like someone tells you "you're sick, and you  might die" then "oh you're just fine, nothing to worry about." then suddenly "oh no, you're sick. this is bad, you should have known that all along!" So, now I have to figure out how to deal with still having no job, no one will hire me, still, i have 4 kids, i can't drive, no friends, no family, and now this. I'm throwing a little pity party right now, because i don't know where to start. Just venting. Sorry.

by on Nov. 9, 2011 at 10:27 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-4):
LancesMom
by on Nov. 9, 2011 at 11:54 AM

Hugs! Lupus is so hard to find. And I am sure they didn't want to put you on the steroids and other meds if it wasn't! I hope that everything goes well for you!

mamasinpajamas
by on Nov. 9, 2011 at 2:01 PM


Quoting LancesMom:

Hugs! Lupus is so hard to find. And I am sure they didn't want to put you on the steroids and other meds if it wasn't! I hope that everything goes well for you!

Thank you. I know what you mean about the meds. When I was diagnosed the first time, two years ago, I was put on a huge list of meds. 19 daily meds. Each one had side effects that another was supposed to counter-act, and if the next one caused problems, they just wanted to add on another drug. I finally stopped taking everything but the NSAIDS and felt better for a while. But the doctor didn't appreciate that I didn't follow her orders, and dismissed me as a patient. Which left me in a bad position, because there isn't a Rheumatologist in the town I live in. There was one specialist that wouldn't see me because he said my case was "more than he could handle". I finally found the doctor I currently have, and after I told him several times, that I was almost sure it was lupus, and he continued to tell me it was fibromyalgia, and now...it's weird because it's so sudden, and I haven't told him anything different than I've told him all along. So I'm wondering: Is he just NOW starting to listen? I worry for others with Lupus, because it is SO important to have a doctor who listens to your concerns and addresses them appropriately, even if it sounds silly or crazy. It's funny, how this all started with "well, my knees hurt all the time, and I can't move my hands" Sometimes I regret going to the doctor at all. I think "if I'd never been diagnosed, I could just go on with my life, and tough it out, without having the added worry and stress" but I know, deep down, that if i were to ignore this, my kids might not have a mom.

TempestRayne
by on Nov. 9, 2011 at 2:08 PM
Please don't ignore it. A good friend of mine died from lupus a few years ago. He was in his mid twenties. He died because no one ever considered lupus because he was a Guy.
Posted on CafeMom Mobile
mamasinpajamas
by on Nov. 9, 2011 at 2:33 PM


Quoting TempestRayne:

Please don't ignore it. A good friend of mine died from lupus a few years ago. He was in his mid twenties. He died because no one ever considered lupus because he was a Guy.


The majority of people with Lupus are women, who are usually diagnosed in their twenties. But when I asked my doctor if she could run a panel on my daughter to check for signs of Lupus, she told me that "kids don't get lupus"!! That made me kinda freak out, because it's well known that there ARE children dealing with Lupus, and that the earlier it's caught, the less time it has to wreak havoc on your body and nervous system, not to mention your immune system. And Lupus is something you're born with. It might not flare up until you're 20. or 30, or EVER, but it's there from birth. I remember, as a kid, complaining all the time about pains in my knees and wrists, and always being told it was growing pains, even when i was 18, my mom would say it was growing pains! Well, i'm 26 now, and I'm not getting any taller. My daughter complains that her hips hurt her, and it makes me worry, because i don't want her to go through what i have to go through, especially in the winter time.

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)