Question fo Kelly71- about lupus limbo

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Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 8/31/2008 4:16 PM (GMT -7)   
Kelly, I have seen you mention lupus limbo several times. Could you explain what that means to you and your doctors? Thanks!
DX- FMS 2003; Hypertension; Depression; PTSD; IBS
 
RX- Ultram 100mg x 2/d; Toprol 100mg/d; Cymbalta 60mg/d; Buspar 5mg x 2/d;  Malic / Magn 1650/300 x 2/d; Claritin 10mg/d; Bendryl 50mg x 2/d;
B-Complex 1/d; Melatonin 5mg/night; Ginseng 500mg x 2/d
 
PRN- Flexeril 10mg; Hyoscine Butyl 2 mg
 
 
"Its never too late to be who you might have been" George Eliot


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/31/2008 7:54 PM (GMT -7)   
Sera,
 
LOL, no problem.  When I say that I am in lupus-limbo, I mean that the doctor's can't figure out if I have lupus or not. shakehead   I haven't gotten a firm "yes" or "no" dx of lupus.  So, I say that I am in limbo-kind of stuck between a dx.  Does that make sense?  BTW-I didn't come up with this brilliant term.  Go to any lupus site and you'll find these words a lot. yeah
 
Hope that clears things up for you-and anyone else who was wondering. :-)
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 8/31/2008 10:53 PM (GMT -7)   
Kelly, thanks for your info. I am working with a client who is dealing with a bad doc who insists that FM does not exist and that her ANA numbers, etc, [that could lead to more exploration regarding auto immune issues] are not real and don't mean a thing except she is aging. I did look for lupus limbo and did not find it. Can you put me in the right direction of more info on this limbo? I am trying to find anything positive and informative, so that when I act as her advocate, I have my facts straight and try and turn her health treatment around.

Also- I have been wondering how you are doing with the tobacco- my husband recently stopped and I just want you to know that its a good thing you are doing!!

Peace!
DX- FMS 2003; Hypertension; Depression; PTSD; IBS
 
RX- Ultram 100mg x 2/d; Toprol 100mg/d; Cymbalta 60mg/d; Buspar 5mg x 2/d;  Malic / Magn 1650/300 x 2/d; Claritin 10mg/d; Bendryl 50mg x 2/d;
B-Complex 1/d; Melatonin 5mg/night; Ginseng 500mg x 2/d
 
PRN- Flexeril 10mg; Hyoscine Butyl 2 mg
 
 
"Its never too late to be who you might have been" George Eliot


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/31/2008 11:32 PM (GMT -7)   
Sera,
 
How amazing you are to be an advocate for your friend.  The world needs more people like you.  :-)
 
First of all, the term "lupus limbo" is just something that possible lupus patients made up because they were/are in a situation like me.  It's not a medical term.  However, if you want to find great info about lupus, you can go to the Lupus Foundation of America website at www.lupus.org.  
 
That really sucks that your friend is getting dismissed by her doc.  I have also had 2 different positive ANAs, along with a lot of other lupus-like symptoms, but my rheumy isn't giving me a yes or no answer.  BTW-obviously, I don't want lupus, I just want to know if I have it or not.  Also, there are so many autoimmune diseases out there, I might (or might not) have one of those.  The whole situation is just incredibly frustrating. mad
 
Oh, thanks for asking about the smoking situation.  I'm trying to keep everyone updated in my "I'm quitting" thread I started, but I don't mind bragging here. LOL  As of right now, I've gone about 72 hours without a cigarette.  I am so proud of myself.  I have been battling this addiction for 12 years, and to think that I've finally beat it has me overjoyed.  I know that I'll always be tempted (and I won't lie to y'all if I do slip up), but this is really a big deal for me. turn


FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson

Post Edited (kelly71) : 9/1/2008 9:22:18 AM (GMT-6)


Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 9/1/2008 2:40 AM (GMT -7)   
Kelly- thanks for the info. I will do some serious reading over the next few days. My client has an appt on Wed of next week with a new rheumy, and I will go with her. Also- congrats on the not smoking! I am proud of you. I know its not the easiest thing, but you have days of not smoking behind you now! Its no longer a goal, no longer a wish- it is reality. Way to go! Thanks again.
Peace!
DX- FMS 2003; Hypertension; Depression; PTSD; IBS
 
RX- Ultram 100mg x 2/d; Toprol 100mg/d; Cymbalta 60mg/d; Buspar 5mg x 2/d;  Malic / Magn 1650/300 x 2/d; Claritin 10mg/d; Bendryl 50mg x 2/d;
B-Complex 1/d; Melatonin 5mg/night; Ginseng 500mg x 2/d
 
PRN- Flexeril 10mg; Hyoscine Butyl 2 mg
 
 
"Its never too late to be who you might have been" George Eliot

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