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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/16/2008 3:37 PM (GMT -7)   
I dont know how to send just you a message on here?
 
"right combination of meds really does take some trial and error. Don't give up!! You'll get it. Most of us do not press for a definitive diagnosis. . . .we care more about treating the symptoms. Lots of docs are very hesitant to label the disease if they aren't absolutely positive and they are doing you a HUGE favor by NOT getting the L word into your medical records. "
 
I  copied this because I was interested in what you meant exactly? Why is it such a bad thing to have this Dx in a medical record?


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/16/2008 3:43 PM (GMT -7)   
Hey Chaya:

I'm thinking that Rosie was referring to, if you have a firm DX of lupus in your medical records if affects your ability to get life insurance, if your health insurance changed it could affect your receiving medical insurance etc.

Hopefully, Rosie will be along to answer the ? herself, but I think that's what she's referring too.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 7/16/2008 3:50 PM (GMT -7)   
Thanks Barb

If thats what she means then its the same for cancer, IBD ect....... There are so many diseases that would prevent life insurance or at least create premiums one cant afford. I was curious if there was a reason other than whats mentioned. I know whenever I go anywhere there are diagnosis codes used with my name. Johns Hopkins lists Lupus on all of my insurance billing papers. I have seen Crohn's show up and interstitial cystitis.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/16/2008 4:16 PM (GMT -7)   
Hi Chaya,

Sorry for the mystery. My email address is available by clicking my member name or by clicking the blue envelope under my name (over to the left of my posts.

Sorry that wasn't clear about a dx in our records. The dx code for your blood work etc. can mean that they are trying to rule out that item or treat for that item . . . not that you are dx'd with those diseases. It can be scary when you see all that.

I *think* some meds can only be billed to certain insurance companies with a firm dx. So some people with lupus, cancer, etc. have a firm dx for a particular reason. But *I think* that the doctors avoid it when possible. I have noticed on the Lupus forum, Lymes forum, Crohn's forum . . . . a lot of members get a dx and then the same doc or another doc will un-dx them. Its happened to me a couple of times. At first it was very frustrating and unsettling. I thought they were saying I wasn't sick. . . . but when I noticed that all the treatment remained in place, I realized that there was some good reason they do that.

When I was first dx'd with lupus, I was at a University hospital and the doctor had a group of students come in and ask questions and make notes and try to make a dx. He he he . . . when the doctor stepped out . . . I gave them some good questions to add to their notes. When the doc came back, they discussed the dx, she said "Lupus" and one of the students asked "what shall we wright in the patient records . . .and the doc said "UCTD".

That same doctor wrote to two of my other doctors and stated "Lupus" in writing. I've had them go back and forth ever since. . . but when I suggest going off certain meds, its a very firm "NO!"

One of the mysteries of medicine. I just like to let new members know about this little game so they don't spend a lot of emotional energy trying to get the doctor to say the magic words.

I may be misinterpreting why they do it . . but it is certainly a frequent conundrum across major diseases.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/16/2008 6:07 PM (GMT -7)   
I agree w/Rosie -- and couldn't say it much better myself.

:-)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/16/2008 6:26 PM (GMT -7)   
Thanks Lynnwood . . . . I wonder about my brain sometimes and its nice to hear that you share the same thoughts about this. But I'm sure, in your case, and for those filing for disability, it would be beneficial to actually have every dx showing in your file!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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