Could I have lupus?

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triplets
New Member


Date Joined Jun 2007
Total Posts : 9
   Posted 7/3/2007 7:31 AM (GMT -7)   
For the past couple years, I have had odd symptoms. RASH, fatigue, irregular / no menstrual cycles, sleep disturbances, decreased lung function, shortness of breath, muscle cramps in lower legs. I saw the rheumologist for elevated ANA 1.640 speckled pattern, but all other tests where normal for Lupus. ANY suggestions.

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/3/2007 7:46 AM (GMT -7)   
Hi triplets. I don't know how much you have read about lupus, but there are some good resources in my signature. Just click on the link in my signature. Lupus is a really hard illness to diagnose because the symptoms are present in so many illnesses. It can also take a long time to progress and it can take a while for labs to reflect what is going on in your body. Unfortunately a lot of us have gone through several years of frustration of being sick without a diagnosis.

What did the rheumatologist think? Your ANA is high enough and with the symptoms you are having, I would hope that they are going to keep trying to figure out what is goin on. Is the rheumy going to at least treat your symptoms?

I do know how frustrating this can be, I have been there myself. I'm glad you are posting here because you are among people who truly understand. Please ask any other questions you have.

Take care
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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triplets
New Member


Date Joined Jun 2007
Total Posts : 9
   Posted 7/3/2007 7:56 AM (GMT -7)   
MY rheumologist said she wasn't sure what to think of my symptoms? I don't have another appointment with her. SHE said to call if I get worse. The tests to confirm lupus where negative, although she never told me the results. She also said, some people and families have a positive ANA's and are completely healthy.
NOT sure where to go from here?

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 7/3/2007 8:09 AM (GMT -7)   
Hi triplets,

I'm sorry, I'm sure you are going through much frustration. If you are having all of those symptoms, it doesn't sound to me like you are healthy. Lupus is not the only disease that can cause a positive ANA. Many other rheumatic diseases can cause this and your symptoms sound like they can be a number of connective tissue diseases. I would call her to see if you can get your blood tests and maybe see another doctor if just for a second opinion. I hope you aren't sick but if you are, you need the right treatment and care.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/3/2007 9:20 AM (GMT -7)   
Hi triplets,

What you are going through is familiar to most of us who have lupus or other autoimmune diseases. I know just how frustrated you must be. Hippi has given you some good resources. Lupus is so hard to diagnose because there isn't a blood test that will confirm it. It took three rheumys for me to finally get a diagnosis. I agree with Des that you should pick up a copy of your chart and make an appointment with another rheumatologist. It may take a few months to get an appointment with a new rheumy, but in the meantime, keep a journal of all of your symptoms whether or not you think they might be related to lupus. You may have had other symptoms in the past that you don't have now. Write it all down. The more information you can give your doctor, the easier their job will be. And take a list of every question you have and make sure your doctor is caring enough to listen to your concerns and answer your questions.

We are here to help you in any way that we can. There are some compassionate, knowledgeable people here and we all know what it's like to be in diagnosis limbo. It's almost the worst part of the disease because until you put a name to whatever you have, you can't start treating your disease.

I'm glad you're here and hope you'll feel free to vent and ask any questions that you have.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/3/2007 9:16 PM (GMT -7)   
Good idea to get a second opinion.  LUpus and other AI diseases can be very difficult to diagnose.  You can be sick and not be able to get a diagnosis or have positive test results and feel OK.
 
Make sure you find a rheumy who is really experienced with lupus and other AI diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (7mg & tapering), 100mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


dctexas
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/12/2009 10:40 AM (GMT -7)   
I have the same symptoms except for the rash. My doctor is checking me for Churg Strauss syndrome. Will know in a few days.

DCTexas
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