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diagnoseme
New Member


Date Joined Jan 2016
Total Posts : 4
   Posted 1/19/2016 2:23 PM (GMT -6)   
Hi! I'm new to the forum and was drawn here out of desperation. I've been struggling with a multitude of symptoms for over 6 months now. As soon as one issue seems to resolve, another one surfaces. Everything started in July 2015. I started running fevers with no apparent illness except extreme bilat knee pain. My PCP ran a few labs and my ANA came back as 1:640 speckled and homogeneous. I started with a rheumy shortly after and her initial thoughts were either Lupus or RA. She ran a full gamut of labs and everything was normal. Neg rheumatoid factor, neg lupus antibodies, neg crp, neg sed rate... negative, negative, negative. My symptoms since have included small joint pain with minimal swelling, swollen inguinal lymph nodes (an extreme reaction to a yeast infection which resolved after treatment), extreme lower back pain, tailbone pain, rotated hip, etc, etc. I saw the rheumy last week and raised suspicion of ankylosing spondylitis so she sent me for a pelvic xray which of course was negative except some trace dextroscoliosis. She also ordered for hla b27- negative and additional crp and sed rate- negative, negative. She has me taking naproxen 500 mg twice a day which is controlling my back pain unless I'm late taking a dose. I also have a very odd numbness/weakness in my hands that extends up both arms but seems worse from forearm to wrist/hand. The same sensation hits my legs and ankles but not nearly as frequent. I am at such a loss. I feel as though I'll never be "normal" again and I'm only 31. Any thoughts, opinions, encouragement would be much appreciated!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/19/2016 2:48 PM (GMT -6)   
If you've looked at Lupus 101, perhaps you noticed what it says about the ANA pattern.

* The pattern of the ANA test can sometimes be helpful in determining which autoimmune disease is present and which treatment program is appropriate.
- The homogeneous, or smooth pattern is found in a variety of connective tissue diseases, as well as in people taking particular drugs, such as certain anti-arrhythmics, anti-convulsants or anti-hypertensives.
- This homogeneous pattern is also the one most commonly seen in healthy individuals who have positive ANA tests.
- The speckled pattern is found in SLE and other connective tissue diseases


Also see www.lupus.org/answers/entry/lupus-diagnostic-criteria to see the list of symptoms -- Lupus is diagnosed by symptoms rather than blood tests, generally by having at least 4 of 11 symptoms (where +ANA is considered a symptom).
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

diagnoseme
New Member


Date Joined Jan 2016
Total Posts : 4
   Posted 1/19/2016 2:59 PM (GMT -6)   
Thank you for the resources, Lynnwood! I am familiar with the symptoms associated with Lupus and other than the pos ANA I have also experienced oral ulcers and arthritis. I guess my question is, what exactly is my rhuemy's game plan!? Is it basically a waiting game for symptoms to surface? How long does it typically take to achieve a proper diagnosis?
Kristy
Undiagnosed but suffering since July 2015

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 51
   Posted 1/19/2016 4:10 PM (GMT -6)   
It can be a very long waiting game for a dx. The very reason lupus is hard to dx is that there are many AI's that have similar symptoms. Some lupus patients have overlapping conditions. Lupus is referred to as The Great Imitator for a reason. Took me over 25 years. My ANA has been borderline since 1988. All other labs have been negative.
You need, if possible to find a Rheumatologist that has lupus patients. And by the way, the criteria is very broad and again to point to many AI issues and not just lupus.
Docs are hesitant to dx without being certain as it can impact your ability to obtain certain insurance coverages. Once it is there, it is impossible to retract.
You will find a new normal regardless what the dx is. Hang in there.

diagnoseme
New Member


Date Joined Jan 2016
Total Posts : 4
   Posted 1/19/2016 4:15 PM (GMT -6)   
Thank you so, so much, Tinkerbee. Sometimes I feel like I must be going crazy but I really think I have a good rheumatologist who is very thorough and compassionate. I follow up with her again on the 26th so we'll go from there!
Kristy
Undiagnosed but suffering since July 2015

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/19/2016 5:08 PM (GMT -6)   
My usual recommendation for finding a good rhuemy, if you don't already have one, is this:

Visit www.lupus.org and find your local chapter. Get in touch with your local chapter and get the list of rheumies that are active on the advisory board. These are the Drs in your area that are interested in Lupus & in treating Lupus.

A diagnosis can take years, but often Drs start treatment (most likely with Plaquenil and possibly Prednisone) to see how you respond before they finalize a diagnosis.

Best way to determine your rheumies game plan is to ask her!! Different Drs approach things differently. I had a lot of muscle weakness & joint pain.

I got a "proper diagnosis" within 4-6 months of my GP first suspecting something auto-immune and sending me to a rheumy. (Later I discovered that I'd been sent to the MOST respected rheumy in a 6 million person metro area, so that may have been a huge factor.)

Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

diagnoseme
New Member


Date Joined Jan 2016
Total Posts : 4
   Posted 1/20/2016 8:15 AM (GMT -6)   
It's funny that you mention Plaquenil because she actually prescribed that for me but I decided not to take it! I didn't want to take a medication for something that I might not have but perhaps I should reconsider... Thank you again for all of your input!
Kristy
Undiagnosed but suffering since July 2015

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/20/2016 10:55 AM (GMT -6)   
I would suggest taking the Plaquenil. It takes 2-3 months to notice if it does anything, so the sooner you get started the better. And like I mentioned, often how you respond to it helps them narrow in on what your diagnosis is.

It does, rather rarely, cause eye problems, so within the first few months of taking it you should visit an ophthalmologist to get a baseline exam, then follow up with an exam every year. Generally it's a vision field test, but just tell the ophthalmologist you need the tests associated with Plaquenil and they know what to do.

www.sw-eng.com/plaquenil-eyes.html
vision.about.com/od/eyeexaminations/a/Plaquenil-And-Your-Eyes.htm
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 1/20/2016 9:58:19 AM (GMT-7)


AGenesis
New Member


Date Joined Feb 2016
Total Posts : 1
   Posted 2/24/2016 12:56 AM (GMT -6)   
Hello to everyone ..I am here for the first time , I went to have my physical exam with my pcp and the DNA (DS)ANTIBODY is 11, and the ANACHOICER (R) SCREEN was positive, I will go to see a Rheumatology doctor in a week , I am very nervous because since I was diagnosed with breast cancer in 2013 and after a double mastectomy in 2014 I do not want to deal with any other serious health problem at least not now, a doctor friend of mine he said the high level in the ANA cold be Lupus or rheumatoid arthritis..I have not idea what is that , I have sometimes one of my finger swelling, I am having neck pain for about two weeks ..I do not have rash in my skin ..I need some advise from you guys to see if I have to something before my consult with my rheumatology. Thank you :)

tashalynn97
Regular Member


Date Joined Apr 2014
Total Posts : 27
   Posted 5/17/2016 8:56 AM (GMT -6)   
I have been trying to get an answer to mine for 14 years. I struggle al the time. No one seems to be able to give me an answer. I even had chronic hives for a year and a half which they sent me to multiple specialist cause they didn't think it was related to autoimmune. Turns out it's a really rare symptom found in lupus so they attempted plaquenil. It's the only thing that worked to get that and other symptoms under control. Got my life back after that kicked in. Recently I have had a set back (still undiagnosed) having adnominal pain that hospitalized me for week and a half with no answers. Gi dr said not GI related. Rheumatilogy said not autoimmune related. I have seen that lupus can affect GI area. Has anyone else had this happen. Had ct,ultrasounds, endoscopy and the stomach empty test. All negative. My labs for autoimmune is Ana positive with speckled pattern and 1:32 but everything else normal. So still no diagnosis. Thoughts? So frustrated at no answer for all these years
Natalie

Lupus,fibromyalgia,osteoarthritis,IBD, Gerd,asthma, epilepsy and past history of ovarian cancer

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/17/2016 10:19 AM (GMT -6)   
I was once hospitalized for abdomen pain that presented a lot like appendicitis but wasn't appendicitis. The only thing the Drs came up with was they offered to do exploratory surgery. I declined, as it was 3 weeks before a marathon that I had trained 2 years for. The pain resolved itself and has never returned with that intensity or duration -- a couple of times a year I still get pain in that area, not nearly as bad, and only lasts a day. I never bother to try to track its cause down...

This was about 5 years before I got the symptoms that eventually lead to the Lupus diagnosis. Actually, something about your post reminded me of this episode I had - never before considered it might be related to my Lupus.

Anyway, does your blood work show elevated inflammation markers? Are you still on Plaquenil? Perhaps you need a course of Prednisone. Are you on Imuran, Cellcept, MTX, anything for the Lupus??
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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