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Update and yet more questions....

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Lupus
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Posted 12/17/2008 5:07 AM (GMT 0)

Hi all...

I had posted a week or so ago about my symptoms, questioning lupus vs. fibro,etc.  Anywho...I've been having a hard time with my symptoms and have been taking Vicodin as needed because the body aches, muscle and joint pain and headaches have been just too much to handle.  I called my PCP to request a refill on my Vicodin and I wanted to explain to him what was going on.  (I originally had seen one of his partners so he didn't even know that any of this has been going on). Anyways...I told him about all my symptoms and told him I hadn't noticed the red rash on my palms at my original appt.  I told him that I have a Rheumy appt set for Jan. 16th.

Anyways....he gladly refilled my Vicodin but sounded very concerned..he said..lets get going on some tests in the meanwhile. He mentioned Lupus right off. So..he ordered a chest x-ray because I've had this horrible pain around my ribs and especially in my right upper back...much worse with a deep breath. (I actually developed this pain long before any of my other symptoms worsened).  He also ordered a CK and an ANA.

So...I had the chest X-ray and that came back clear.  CK came back normal at 44.  I just got my ANA back today.  (I work at the clinic and have signed a release so i can view my records online). Anyway...the ANA came back at 0.9.  This confuses me because it looks like the ANA is usually measured as a titer....1:160,etc.  Mayo did the testing so I guess they measure their results in this form??  Units??  Anyways.....like I said...mine was 0.9 and that was pretty much the top of the negative range.  It said that anything equal to or less than 1.0 was considered normal.  So...I guess I'm relieved in a way...but not really.  I know my result was negative...but does it make a difference that it's at the very high end of normal??? If that makes sense? Also..with the chest X-ray...can one have pleuritis that doesn't show up on X-ray??

I know I should know this stuff because I'm a nurse..but quite frankly..I find it all very confusing.  I actually saw my PCP in the hallway at work yesterday and I showed him the rash on my palms.  He acted concerned and said it looks almost like a vasculitis.  I was like "so this looks weird to you" and he's like..."yeah..it does"..lol.

So....I am going to try to talk to him tomorrow now that my ANA is back.  I'm just wondering if I don't have to worry about lupus because my result was considered negative...and how about it being a high negative?  Do you think re-testing at my rheumy appt would be of benefit...do ANA's change?  Could one have a negative ANA and still have lupus? ...it doesn't seem likely because it says it's positive in over 95 percent of folks with lupus?

I'm sorry to be such a bother with all my questions.  I just am having a very hard time waiting for my rheumy appt.  My joints have been bothering me soooo badly...it's hard to not be reminded of it almost every minute of the day.  My joint pains are so random too....it can change from one minute to the next.  One minute...a stabbing pain in my knee...the next minute..a stabbing pain in my left thumb.  The overall body pain and fatigue is getting the best of me too.  Between working, taking care of my sweet little guy, getting ready for X-mas...I'm about ready to burst!!!

I'm really hoping it's not lupus obviously....but I guess I'm just getting caught up in not knowing what's going on.  I know a lot of you have mentioned it can take years for a dx of lupus, AI disorders, fibro, etc. Bahhh....ok...sorry this got so long again...yeek.  Just wondering if anyone has any thoughts for me.

Take care..

Olivia

Posted 12/17/2008 4:28 PM (GMT 0)
Hi Olivia,

 

Well, from the description of your joint pain being so fleeting and moving around, very random, that screamed Fibromyalgia.  Lupus joint pain doesn't move around like that. It stays put in one or more places.  Lupus joint pain is a form of arthritis. So on a bone scan it will show up.  Fibro joint pain is not arthritic.  In fact the pain is not actually IN the joints.  It's the muscles, tendons, ligaments that surround the joints that is causing pain.  On a bone scan, your joints will look perfectly normal.  A bone scan would be a very good test to have done.  It will tell an awful lot about what is going on.

 

The rib/upper back pain you're having could be pleurisy, but it would show up on a chest xray. Pleurisy also doesn't really make your back hurt (in most cases).  You feel it in your chest, your lungs, in the front.  In Fibro, rib/chest/back pain like you described is called Costochondritis.  It can be horribly painful and excruciating when you take a deep breath in.  I get this, and it's awful. 

 

Rashes.  They can be present in Fibro as well. You can also have a very slight redness to your cheeks with Fibro, but not the full blown lupus butterfly rash.

 

Your ANA can change often.  The test is a snapshot of what it's doing right now.  It can be negative one moment and positive the next.  Why doctors run this is that they want to see how high it actually is. A very high positive ANA is a good indicator that something AI is going on. However, you can have a negative ANA and still have lupus. Mine is negative right now.  But my lupus is very quiet too.

 

If all of your labs are coming back normal, your rheumy should test you for Fibro. Fibro will present normal blood work.  He/she will do a physical exam and take note of all your symptoms.  There are no blood tests for Fibro. 

 

I hope this helps Olivia.  It's good to keep more than just Lupus as the possibility.  So many diseases mimick lupus and fibro, and they both mimick each other. It's so frustrating.  One of the reasons why it can take so long to get a diangosis.

I would take a picture of your hand rash and any other rashes you get.  Just in case they disappear before your appointment.

Keep us posted and take it easy. I know this is hard.  We're here for you!

Ginny 

 

 

Posted 12/17/2008 8:30 PM (GMT 0)

HI Ginny...

Thanks so much for your reply....you are always so kind and helpful!!!!  I ended up e-mailing my doc today regarding the ANA results.  He didn't say a lot...just that the chances of it being lupus are lower now because of the ANA results and that the rheumy will test for other disorders at my appt.  I love my doc...he is so kind and open.  It's nice that I have a working relationship with him too...makes things easier.  So...I guess I will just have to wait until the Rheumy appt....a month never seemed so long..lol.  I guess maybe I'm having flashbacks of my endometriosis.  It took nearly 10 years to get a diagnosis.  Noone believed me...."take Ibuprofen...some women have more trouble with cramps than others". Bahhhhh!

Is the 0.9 result something you have heard of or can relate with.  In all the research I've done...ANA is always reported in titer form.  I can make more sense of that.....I wonder how a 0.9 relates in titer form...lol??  Weird??

Ok...thanks again for all your help both this time and your response to my other post.  I meant to get back to you but you know how that goes.  I do agree with you about the hormone thing though!!!  I think a lot of my problems may be related to hormones.  Another thing that I thought of is the fact that I'm back on birth control pills now...(started them about a year ago...after Cooper was born).  For three months this summer...I was on a high dose pill to help with break thru bleeding...it helped the bleeding...but I think that's when I started feeling worse..connection??  I did see somewhere that bcp's can trigger flares in both lupus and fibro..hmmmm????

Ok..I better run...little man needs a bath...he has most of his lunch in his hair smhair   :).  Ok..I hope to talk to you all soon...thanks so much.

Olivia

Posted 12/17/2008 9:41 PM (GMT 0)
Sorry, I don't think any of us have been to a lab or website that talks about something like a .9 ANA -- most often it's in titers, sometimes people will get a straight number but those seem to be in the 3-digit range. I'm interested to see how they end up explaining this number to you. I don't remember, have you seen the 4 of 11 criteria list yet? The lab tests really are not conclusive, lupus can occur without bloodwork - that's according to the rheumatology and lupus professional organizations -- you'd think more drs would know this! Check the link in my signature if you haven't seen this yet.... Hang in there,
Posted 12/18/2008 3:47 PM (GMT 0)
I'm sorry you are going through all of this. Diagnosis limbo can be hard and frustrating to deal with. Another thing to keep in mind is that if you are developing lupus or another autoimmune disease, it can progress slowly and sometimes it takes a while for your labs to catch up with your symptoms. Initially all I had was a low positive ANA and a high sed rate. Over time I had more and more positive labs, so it's a good idea to get re-tested every so often. I hope you get some answers and some relief soon. Keep us updated and take care
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