Lupus and appointment - feedback please

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CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 11/19/2005 9:18 PM (GMT -7)   
So, I finally got in to see my rhuemy and asked him my lupus question. What he said seemed to contradict a little what was posted here previously. Here's how it went:
 
"I was wondering if I've ever been tested for Lupus?"
"there's no test for lupus..."
"Oh? I thought there was."
"Well, there's the ANA (I think that is what he said) and yours has been positive."
"It has? So, what does that mean?"
"It could mean anything."
"?"
"Lupus is a clinical diagnosis based on what the doctor can see."
"Okay.....and...?"
Then that was it. He didn't offer any more information on the subject.
 
So, I don't know. He has dissed the previous doctors' dx of PA saying I only have RA - BUT that it doesn't matter because I'd be treated all the same.....based on that "clinical diagnosis" comment re:lupus, he didn't see all the problems I had years ago clearly indicating the psoriatic arthritis. I think it matters in the DX because of the other issues I've been having & certain dr's have been blaming the "obvious" PA symptoms. That is my question w/Lupus....I'd rather not have it, but if I DO, aren't there other precautions that need to be addressed if additional problems I'm having could be caused by it?
 
Also, he was very mad at me for not starting Enbrel yet. Basically said my reasonings were wrong and I am misguided by my fear of getting sick again (though he understood - ahhh, a little bedside manner!)....but, that he'd make a deal with me. Get blood work drawn in 2 weeks, then again in 5. Currently, my RA factor has been normal and my white blood count low - if my WBC is normal and my RA factor is high, then he wants to put me on a new drug they are testing (infusion - I think we've discussed it here previously) - if I do NOT qualify for the study, then I have to start taking the Enbrel. I agreed.
 
Thoughts? Am I stressed over nothing?
**
 


Britandcelt
Regular Member


Date Joined Nov 2005
Total Posts : 49
   Posted 11/19/2005 9:49 PM (GMT -7)   

First of all, sounds as if you may need a new rheumatologist.  If you can't get proper education and questions answered in a professional manner, than he's not doing his job.  Second, no need to panic just yet!  The ANA test does rule out lupus, but can also be used to rule out certain autoimmune diseases .  Sometimes the immune system malfunctions and will produce antibodies that attack your own tissues and cells.  When this occurs, it is considered an autoimmune condition.  A +ANA is associated with severe autoimmune diseases such as SLE (systemic lupus erythematosus), rheumatoid arthritis, juvenile RA, and autoimmune hepatitis amongst others.  Symptoms of SLE can include arthritis, rash, and thrombocytopenia (low platelet count).  If you have all three, you probably have Lupus.  You need more diagnostic testing.   Ask for an ANA and then if that is positive, which it probably will be with the RA, ask for these, an anti-dsDNA and a anti-SM.  If these are positive, a diagnosis of Lupus can be made.  You may also want to read up on the signs and symptoms of these conditions since they can cause positive ANA's.  Sjogrens disease, scleroderma, Raynauds disease.  Seriously, if you are concerned, your rheumatologist could have told you all this.  I am a Certified Medical Assistant and I had access to this info from one book.  You doctor can ease your anxiety by reassuring you that with RA, you probably don't have Lupus, but hey, lets order three simple blood tests to rule it out.  Oh, one more bit of advice, with the RA that you have and obviuos symptoms that are scaring you into thinking you have Lupus, take the Enbrel.  It it doesn't agree with you or show improvement, you can come off with doctors ok.  Hope I helped and I hope you don't have Lupus!  Good luck.

 

Julia


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 11/20/2005 12:10 AM (GMT -7)   
Thanks Julia, I appreciate all the info.
 
Some background on me - I did have JRA as a child (I think he mentioned positive ANA is common if you had that.) I was unoffically diagnosed with autoimmune hepatitis last December (they never did the biopsy for some reason so I call it 'unoffical'.)  I was on Remicade at that time and spent the next 8 months fighting infection after infection (I have since stopped Remicade.) In 2003 I had an acute case of EBV/Mono that caused liver and spleen problems. Since then my liver and WBC have been up and down. about 10 years ago I started having severe problems with my feet (a classic psoriatic arthritis issues I'm told) and was also experiencing what they were calling Raynaud's Syndrome in my feet on top of other issues.
 
Needless to say, something is not right with my immune system. However, though the PCP feels there are some serious issues that need addressing, the Rhuemy is the one who needs to address them and so far, out of the 2 doctor's I've seen at this place - both are apathetic to diagnosing anything even though it's clear something is not right, which I fear is the reason I'm having such a  hard time with applying for SDI.
 
I wish he had offered the "tests to rule it out" option, that certainly would have eased my mind! His only remark was 'there are no tests for lupus..." 
 
** 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/20/2005 6:02 AM (GMT -7)   
Oh CaMama- Can you get a 2nd opinion? Find another rheumy, print this thread out and take it to hima nd ask him what the $#@%!?!?! Julia made some very good points, we've said it before, dr.'s some times are in such a hurry that they fail to look deep into a situation... Make them open their eyes... Good luck to you and hope to hear from you soon - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1998 - While 11 weeks pregnant
 
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/20/2005 8:45 AM (GMT -7)   
I agree.
Welcome Julia! HW is so very glad to have you. You provided great and accurate info! Bravo! I honestly DO NOT understand doctors train of thought sometimes...it makes no sense.
Like, I have a very good friend of mine who is on very very high doses of BP meds. And the Dr told him that there are NO SIDE EFFECTS to them. WHAT!!! In my med book, geesh...there are awful side effects and my friend has SERIOUS effects from this med too!
Camama, I'm so sorry you're dealing with "run around" docs! Especially since you feel so bad and SSI/Dis is at stake.
There are a number of labs that can be drawn to further investigate Lupus...and I think you should have them and done thoroghly at that too!
Is it possible to start from scratch with a new rheummy?
Take care
Erin

Britandcelt
Regular Member


Date Joined Nov 2005
Total Posts : 49
   Posted 11/20/2005 6:23 PM (GMT -7)   

Hi there,

Thanks for the welcome!  I know that it is tough to find an MD that you feel you can trust and know will do the right thing for you.  I have a rheumatologist who I started seeing when my arthritis issues started occuring and he's quite good.  In my area, there are only two rheumatologists, one man, one woman.  My first referral was to the woman who saw that I was a 24 year old on Paxil and immediately said I was "faking".  I got a second opinion from the male MD who immediately put me on Mobic, Plaquenil, and a dose of Prednisone.  I got the help I needed from him and haven't had need to see him in a while now.  I too have an extremely awful immune system.  My biggest issue is Ulcerative Colitis, I also suffer from GERD, allergic rhinitis, chronic sinusitis (my surgery was July 04), chronic fatigue, anxiety/depression (hey, what 26 year old wouldn't be depressed with the health of a 70 year old!), dysmenorrhea, Vitamin B-12 deficiency, lower back spasms,  and a couple other minor issues.  Most recently, because of the back pain, I had an MRI which showed subligamentous disc herniation at L3-4 which is impinging on the thecal sac, hyperostosis of the facet joints (excessive bone growth), and degenerative disease.  So now I am going to yet another specialist next week for that.  I am lucky that I am a Certified Medical Assistant and my PCP is the actual physician that I MA for.  She listens to all my needs and knows that I pretty much know my own body.  I can take it upon myself to order bloodwork that I feel I need.  I always have to check my ESR (sedimentation rate) and CMP because of the Ulcerative Colitis anyway.  I pass that invitation onto anyone here as well, as far as information is concerned.  If you don't have access to an MD, I can ask her any questions that you'd like answered.  We have actually had three positive ANA patients in the last month so we've been dealing with that a lot.  So, I look forward to hearing any questions and coming back soon!

Julia


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 11/21/2005 9:06 AM (GMT -7)   
Wow....that is a lot for 24 years old! I can't believe they actually TOLD you that you were faking it! I've had some pretty bad situations with doctors, but that is insane!
 
I appreciate all your help. I'm off for the week, take care everyone!
**


 

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