Lupus now confirmed!

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stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 11/18/2011 10:05 AM (GMT -6)   
After I saw rheumy at beginning of October and had such a bad appt with him, he spent more time telling me that even though I tested positive for Antiphospholipid syndrome twice after my son was stillborn that I couldn't possibly have Antiphospholipid syndrome as haven't had blood clot since, then the sciatic pain couldn't be sciatica as the pain didn't go all way down to my foot and then couldn't possibly have Lupus as no full on facial rash - guess what.......blood test results in and tested positive for Lupus!
 
Had to see my GP this morning as she wanted to see how I was getting on with the gabapentin and oxycodone she px last time I saw her and she said 'oh we have the blood tests results from the rheumy and they are positive' Was so shocked that it actually came back positive that didn't ask any more. The Rheumy made me feel I was wasting his time so had convinced myself everything would come back negative and don't see him again until January so will be interesting to see what he says. Whilst I didn't want it to be Lupus it is good to have dx and know what it is and that I'm not going mad and that it isn't all in my mind. Am already on azathioprine for the Crohn's and the Lupus is most probably Humira induced as it started after I took it.
 
So something else to add to my ever growing list of things my immune system doesn't like about me but at least it is a short worded illness this time! :)

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 11/23/2011 1:25 PM (GMT -6)   
Its feel good to finally get a dx while feeling bad at the same time to have a dx. I am happy though for you that you finally have an answer :)

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 11/23/2011 5:36 PM (GMT -6)   
Thanks Lawchick, used to dealing with the Crohn's and all it's associated fun and games and will be a learning curve learning to deal with this as well. Like I said just glad to have an answer and know what it is I'm dealing with. Oddly enough the pain had settled down a bit with the oxycodone and gabapentin but since I had chest infection and then a bowel obstruction over weekend it has all gone nuts again and can barely life my arms up, it's stuff like that which will take some getting used to. It's like when one thing goes wrong everything else comes out in sympathy.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

Healingwithin
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 12/1/2011 1:59 PM (GMT -6)   
As you all will guess new at this. Was told by the dermo doctor the biopsy came back positive for Lupus. Went to see the rheumy and she said I had a bunch of stuff going on. But I did not have the sle I might have the skin and Sojgens and fibro.
Not really sure what to think I know my ss-a test was high. She was in a bad mood I guess she was yelling at the patient before me. When I let it known I was confussed she kept saying you have a bunch of stuff going on but not sle and took a little bit of blood no real exam reason I say this is she said my hands were swollen and puffy I let it known my ankles were as well she never even look. The test all started by my dermo because I had two dark marks in my ears loss of hair bald red spot on top front of scalp extreme tiredness and scaly red rash on elbows.
and better yet she even put me on the plaquenil 400 mg a day. It has helped a lot with the tiredness. Not the pain so much.
Can someone plz help me understand what is going on.
And don't you usually undress and put on a gown for the exam.
Like everyone else I would rather not have any disease but we all know are bodies and I have most of the symptoms including memory fog which by the way is more than a fog it really can blow.
And I see a lot of you have issues with the rheumy. Why is this so difficult let alone scarey for first timers
healingwithin

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 12/1/2011 2:33 PM (GMT -6)   
I've never had to undress for a rheumy exam, and been seeing them since 2002. (3 different ones.) Mostly they bend some joints to see how they feel, ask questions, maybe test the strength in your hands, order joint xrays, and do lots of blood work. Check your chest sounds, look at eyes, ears, nose, mouth....maybe look at toes.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 12/1/2011 2:48 PM (GMT -6)   
I had to undress for my exam, he tested all my joints for swelling, could have told him I had none but God forbid he would believe me. He also did the fibromylagia tests and looked for rashes and had me bend forward to try and touch my toes - chance would be a fine thing and sideways whilst keeping back against the wall and also measured lung expansion and some other measurements.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

Healingwithin
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 12/1/2011 3:12 PM (GMT -6)   
Thank you both for the quick reply. I had read they did the exam like stripey and she did not order test other than one tube of blood because we kept asking where was the ss-a test. Which I still have no clue what that is and she did not have it but my dermo did I just got done with his appt. before hers. she did listen very quickly to lungs and chest just looked at my hands not ears nose throat just under my tongue. When she came in you could tell she was still angry from last patient and I guess that happens but when your trying to find out what is happening to you. Just not the best way to start and any questions she acted like how dare we ask. Was hoping to get answers think I have lupus not sure she said I had skin but not sle.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/1/2011 7:46 PM (GMT -6)   
My first visit he looked at my ankles, hands, face, and neck.Did bloodwork too.
Second visit he did the same and told me the results.
Third visit did the same and did a sort of tapping of my joints and muscles, asking if it hurt.
Didn't have to put on a gown. :)
I'm seeing him again in a couple of weeks for check up and more bloodwork. :S
Joy
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