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morning star
04-04-2007, 02:06 PM
I've had a positive ANA 1:320 for SLE and saw my Rheumie today for the 1st time, she ran more definitive tests, but said she's not calling it SLE right now because I don't have the DIP joints, meaning when you make a fist the joints in between your fingers are swollen. I was wondering if this was common in SLE or if anyone was diagnosed without having these?

MARYCAIN
04-04-2007, 06:03 PM
I'm not sure what your doctor is talking about - swelling of the distal interphalangeal (DIP) joint isn't a diagnostic indicator for lupus, and there are many people who have been diagnosed with lupus with no joint involvement at all.

It is important to remember that an accurate diagnosis of lupus depends on a number of lab tests and physical symptoms - a positive ANA doesn't mean you have lupus - only that lupus is a possibility. In fact the majority of people with a positive ANA don't have lupus. Hopefully, once your doctor has all your test results, she will be able to give you a clear cut diagnosis. But you don't have to have swelling of the DIP joint to be diagnosed with lupus, so I would ask the doctor why she thinks this is important to your diagnosis.

Missy
04-04-2007, 06:14 PM
Ditto what MaryCain said..........I don't have wollen hand joints and didn't, even when my kidneys weren't functioning very well due to Lupus........was this a Gp or Rheumy?

morning star
04-04-2007, 07:08 PM
Thanks so much for your reply she did do a full lupus lab workup and urinalysis on me but I won't have the result until next week. But the joints in my hands and especially in the tops of my feet hurt really bad, also my elbows along with generalized achiness and extreme fatigue also shortness of breath and chest pain, which I'm scheduled for a PFT in 3 weeks to eval this. I was getting nervous again when she had mentioned this and she also said she isn't calling it lupus at this point. So I guess we'll wait and see next week to see what my test results are.

msdawnie44
04-11-2007, 07:11 AM
Another good way to be is to have a biopsy....that is what finally got my diagnosis....severe inflamation disease was found in some tumors on my hips and ribs....anyway...had a positive ANA as well...just a thought...Good luck to you and GOD BLESS!! Dawn

tlujan1
04-17-2007, 03:01 PM
I havent heard of this before, but I am newly diagnosed...like a month and a half. I do have the elbow pain and the top of my feet do hurt. And also a number of other problems. You dont have to stick with this doctor. You can get a second opinion.

Good luck and hope you get answers. It is hard to get diagnosed and I know how hard it is to live with the pain. Hang in there.

Tanya

morning star
04-17-2007, 06:18 PM
I received some of tests back today but there's another test I won't have back for another week, but they are already saying I'll just fax you the results, I'm like okay well what if I don't understand them and what if they are positive(it's called a Reichlen test). The Dr. I'm seeing has her own lupus research clinic, so if I don't have all the classic lupus signs I guess I'm not on her list. So we will see next week anyways. So even if I don't have lupus I'd still like to try to find out what is wrong with me. Hello!!! :roll:

morning star
04-19-2007, 02:32 PM
So I went to my pulmonologist today and he gave me asthma medicine(steroid) for my shortness of breath. But the problem I have now with shortness of breath is not the same type of breathing problem I had when I had asthma years ago. I would always wheeze when I had an attack and now all I'm having is shortness of breath and congestion. Anyone else have breathing prob's?

MARYCAIN
04-20-2007, 05:49 PM
Hi, Morning Star - I 've had asthma for years, mostly allergy related, but since lupus, I've also developed some problems with scarring on the lungs from inflammation. This didn't show up on a regular x-ray, I had to have a spiral CT scan and a bronchoscopy. So if your breathing problems continue, you might talk to your doctor about additional tests to find out what is going on.

IloveHistory
04-21-2007, 11:21 AM
Hi Morning Star!

Yes, I have breathing problems, but mine are Asthma-related. I agree with Marycain about speaking to your doctor about additional testing if your breathing problems continue. C.T. Scans and M.R.I.s are FAR more detailed than X-Rays and X-Rays often miss things, which are then easily picked up by C.T. Scan or M.R.I.

Please let us know how you get on! I sincerely hope that you begin to feel much better soon. I will pray for your speedy recovery because for me, there is NOTHING that makes me more irritable than not being able to breathe properly!

Keep well, good luck and God bless! :)

morning star
04-25-2007, 10:11 AM
So I received my test results back from the Reichlen test and the only thing positive as my ANA again which last time is was 1:320 now it 1:1180. So they are stating I don't have SLE because all other tests were negative. I did see my pulmonologist and he said it might be asthma and gave me a steroid inhaler. So now I guess I'm back to square one, as the rheum. said I need to back to my PCP for further tx. I'm very frustrated I'm not a hypocondriac and I'm not making this stuff up. I feel like I'm 80 yrs old, joint's ache, flu-like, rashes, headaches every day, shortness of breath, short-term memory prob's, fatigue, Verry frustrated.

MARYCAIN
04-25-2007, 10:23 AM
MorningStar, do you know if your doctor has tested you for other conditions that could mimic the symptoms of lupus? Conditions like fibromyalgia, chronic fatigue syndrome, lyme disease, and thyroid disease can all cause symptoms similar to lupus. Since your PCP doesn't seem to be working with you on finding a diagnosis, it might be time to look for an internist or other doctor who specializes in diagnostics. Clearly something is going on, and just because one illness has been ruled out doesn't mean your doctors should stop looking for a diagnosis. You may have to be very assertive with your doctors in pushing for better care, but remember that the doctor works for you, not the other way around.

morning star
04-25-2007, 12:54 PM
My Rheum did state that I didn't have fibromyaglia after asking her. But I'm having an immunologist I work with look over my labs, he is leaving our practice very soon and I want his opinion. Thanks.

morning star
04-26-2007, 06:37 PM
I finally got a dx of sle. The Dr. I work with said my 2nd ANA was significantly elevated and a couple other test and said he had 2 patients currently with similar bloodwork and that Rheum.(he's a immunologist)want to have all the bloodwork and arthritic signs available before they will dx you. I'm just relieved to finally get dx. 8) He said so many have the symptoms first but takes awile for the lab to catch up.

luppy28
04-26-2007, 08:28 PM
Mine started when my wrists hurts.....and then it follows to my feet that swollen this is a a year ago. Then my physician test my urine and found out that I exceeded too much protein in my urine....as a months go on....I feel so weak and all I like to do is to be in coach bec. all my joints are hurting and throbbing..............now I found out that it is lupus attacking parts of my body.....very baddddddd......