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crlauinger
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/15/2008 3:29 PM (GMT -7)   
For 11 years now I have been dealing with symptoms of Lupus. I was first told that I has RA, then Lyme, then I was tested for lupus and ms.
Anyway, here is my question...
 
I had gone to the dr. for a spot on my cheek that was kind of disturbing. They sent me to a surgeon who told me that she wanted it taken off. She sent the sample in and it came back that it was not cancer. She told me that I would have to come in for further tests as the pathology report showed inflamation and they wanted to run some blood work to check for Lupus.
 
Any, I talked to my normal dr. about doing the lab work here and just having it sent to the surgeon. She called them and told them that I had been tested in July. Now they do not want to do anything else.
 
Any advice????
 
Thanks
 
crlauinger

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/15/2008 4:50 PM (GMT -7)   
SEE A DERMETOLOGIST! Also ask for a referal if you need one and see a rheumetologist. Insist on it. The blood work is not enough even if it is all negative to tell if you have an autoimmune disease. Just make sure the rheumy is a lupus expert- not all rheumys are. Check with your local lupus support group and/or lupus.org to find a lupus expert in your area.

Your doctor obviously thinks like so many others that simple blood work can be used to rule out lupus and other autoimmune conditions. This is simply not true. My blood work is all normal, yet the inflammation from my lupus damaged my gallbladder, I had pericarditis at one point, pluersy for years, and some kind of autoimmune liver involvement. I have been diagnosed with lupus based on having so many of the 11 criteria without blood work. Simply put, a rare group never go positive another group go positive only after serious organ damage another after treatment has everything under control another group are positive from early on and still others will have positive blood work and nothing wrong with them. So the blood work is the worst way to screen for autoimmune diseases. ONLY a rheumy who is a lupus expert can screen effectively and even they will tell you some cases they can't be sure for a while.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


crlauinger
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/15/2008 9:22 PM (GMT -7)   
Thank you so much for the information. For me, and others, this can be a long frustrating journey. I really appreciate the information as I just did not know what else I could do.
 
Thanks again!
 
Chris

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/15/2008 9:37 PM (GMT -7)   
Hi Chris,
   Redrose gave you some good info. It took 13 years for my dx. Finally, after all those years, I was sent to a dermatologist, then a rheumy and got my dx right away.
   Good luck and keep us updated. You will be in my thoughts and prayers.
                                                      Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/16/2008 2:07 AM (GMT -7)   
I had 4 of the 11 criteria when I was 14. I was 28 when dxed and only a few months from 29. It is a long frustrating journey. I spent years being told it was all in my head.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/16/2008 7:26 AM (GMT -7)   
crlauinger, I'm sorry you are going through this and yes, it is very very frustrating. It's sad that so many if us have to go through years and years of diagnosis limbo and docs saying there is nothing wrong because our labs aren't bad enough.

Hang in there and don't give up. I always say that you are the expert on your body and you know it better than anyone else and you know if something is wrong. Don't give up looking for a good doc who will really listen.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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