Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
judynurse

Junior Member
Registered:
Posts: 15
 #1 
Finally got a definitive diagnosis on 2 autoimmune disorders. Definitely do NOT have lupus or sjorgens. Do have arthritis & soft brittle bones. Due to a bad car wreck in July 2016 I have to have surgery on both sides of chest in 9 days. Had breast implants in 1980 & 1984 due to precancerous growths. In wreck, both implants were collapsed, muscles torn & displaced. Having implants replaced & muscles returned to proper positions. Had to cancel appt with rheum in order to see surgeon in another town. Rheum was angry that family MD kept me on prednisone for 90 days just on basis of positive ANA. Also wanted to know why he did not send me to a dermatologist for rashes! Most turned out to be allergies to lotions, soaps. Cleared up now!! If surgery goes well, will see about treatment for arthritis. Hope to be better by end of summer!
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #2 
I'm sorry to hear that you had to have surgery, however, glad you do not have lupus. You say 2 AI issues. What are you referring to ? RA is autoimmune. 
In any event, reading back on your posts, really speaks volumes on how folks get a little, shall we say, overzealous on self diagnosis?  A great reminder that Dr Google doesn't work. Get a professonial opinion ALWAYS.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,783
 #3 
Yay no lupus :)
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
judynurse

Junior Member
Registered:
Posts: 15
 #4 
Did not self diagnose. I am a retired nurse, my MD did the diagnosis based on the ANA test, prescribed the prednisone based on his own research & e,experience. Had what appeared to be classic butterfly rash also at the time. Had go wait about 5 months to see a rheumatologist in another state as none here accepting new patients. Do not appear to have RA, just regular arthritis. Also have gone from 125+ lbs to 109 in past month, so something wrong. I have had patients with lupus, & thought MD might have a point. Did not agree with prednisone over such a long period. Also have used the lotions, soaps that now cause rashes for over 20 yrs. Allergies are new. As I am 75 yrs old, the fatigue is not so abnormal. I can self diagnose a cold, flu & bronchitis. Do not try to diagnose autoimmune disease in myself! Don't think anyone should. That requires lab work & specialists.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #5 
"I also looked up everything I could find out about Lupus on the Internet, called the Lupus Foundation in St. Louis, Mo., nearest one to me, got more information, and began to try to manage my Lupus.  When symptoms got really bad, called my MD, asked about at least low-dose steroid treatments, and he put me on Prednisone"


Your words, not mine. Not trying to bash, just hoping others take heed....
A learning moment, if you will.....

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
judynurse

Junior Member
Registered:
Posts: 15
 #6 
True, thought I had lupus, but MD did ANA test, symptoms including butterfly rash were indicative of lupus, asked MD about prednisone, expected a 1 week treatment, which is ostandard for safety. Received a letter from MD with diagnosis of lupus, along with 90 day script. He did not refer me to rheumatologist, I found one, asked him for referral. I did the best I could at the time. Important point is that I did get the referral, did get further tests. Have not seen dermatologist, that had to wait until after surgery. Each person has to do the best they can at the time. Having been a nurse is often a disadvantage, since we know too much about too many symptoms, diseases. Fortunately found I do not have lupus, which is a great relief. Dealing with aftereffects of car wreck is enough to be going on with for now!!
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #7 
Hope it all works out for you...

I just hate seeing new folks on here every day thinking they have Lupus.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
judynurse

Junior Member
Registered:
Posts: 15
 #8 
Agree with you that self diagnosis or treatment can be dangerous. It is also an occupational hazard for nurses & md's, current & retired. Knowing so much can lead to problems for anyone!!
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #9 
In the words of HOUSE....

 
Image result for house it's never lupus

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
judynurse

Junior Member
Registered:
Posts: 15
 #10 
So everyone with the symptoms hopes . I was very fortunate, it wasn't lupus in my case. Will eventually find out what ANA is actually true in my case. I wish no one had lupus, & pray for a real cure for this difficult disease.
pianist

Avatar / Picture

Senior Member
Registered:
Posts: 236
 #11 
Not sure what you mean by "Will eventually find out what ANA is actually true in my case." I'm sure you know this, but for the others, the ANA isn't a lupus diagnosis and a doc that bases a diagnosis on it needs to go back to school.
judynurse

Junior Member
Registered:
Posts: 15
 #12 
My MD is a general family practitioner. They treat family members, not small children. He also treats geriatric patients and has developed a side practice 2 days a week treating those with HIV. He is not a rheumatologist or specialist. He has been my MD for 26 yrs, & a good one. Not his fault be is not expert in ANA. He did the best he could with symptoms.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #13 
"Not his fault be is not expert in ANA. He did the best he could with symptoms."

Another good thing to point out to new folks. This doc SHOULD have referred her to a Rheumatologist in the first place. It would have saved a lot of worry in her case and if she really did have lupus, she should have been started on Plaquenil. A dermatologist is helpful in diagnosis when a suspect rash can be biopsied.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,783
 #14 
I crack up every time I watch house and they think it's lupus and then he gets mad and says it's not lupus expect for one episode it was lupus
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
shutterbug

Avatar / Picture

Contributing Member
Registered:
Posts: 402
 #15 
Cake - there was one episode in which it actually was lupus. There was also one that was Sjogrens.
Previous Topic | Next Topic
Print
Reply

Quick Navigation: