Why is diagnosis so hard!

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LadyLynda0712
Regular Member


Date Joined Jul 2016
Total Posts : 30
   Posted 12/22/2017 9:14 AM (GMT -6)   
Hi,

According to my internist, infectious diseases doc (lymes, nothing active now they say but I did have a positive IGM antibody b. burgdorferi, but negative IGG western blot), and rheumatologist, I am a "conundrum." I have not been feeling well for a couple of months now. Extremely fatigued, short term memory loss, every bone in my body hurts it seems, headaches, face rashes but only my nose and chin, not forehead, my parotid/salivary glands swell up huge like mumps (never both, it's one then the other) and I go straight to 103 degree fevers. I've been coughing it seems for a month straight "but your lungs look good!" on xray (I'm coughing up blood!) I was in ER two weekends ago with "severe vomiting/nonspecific" and "abdominal pain/nonspecific" as CT of abdomen was "normal." They concluded stomach flu, gave me Zofran and sent me home.

So far, my tests are Positive ANA, high Sed Rate (57), CRP elevated (39). "Trace" blood urine ("normal"). My rheumatologist did a Protein Electrophoresis Blood panel, and it's all "normal range" but, each one is the highest number in that range (Gamma gobulin 1.4, with 1.4 highest, alpha 1 gobulin 0.3 with 0.3 highest, etc.) and other tests, which barely scrape the low ends of "normal." Even a spinal tap was done and normal (trace blood, but they say from needle puncture).

I've had bad knees for a couple of years, so that hurting isn't new. But I've had weird things, like no reflexes in my left leg (banged on knee, scraped bottom of foot, no movement but I felt it). I do have a couple tests yet to complete (head MRI, upper endo w/colonoscopy). I get big toe pain, but no obvious swelling/redness to suggest "gout." I've had depression/PTSD for several years (my daughter died when I was with her) but I think under great control, although last month I had a "psychotic" episode which was new (a grocery store incident I'd rather not go into, embarrassing and NOT like me at all) and I cry at the drop of a hat. sad

Sorry if this is long, I am just tired of all the appointments, hospital trips, etc. when I am feeling so poorly to begin with. I am coming to the Lupus board because it was a word that my rheumatologist was making reference to, she said something is obviously up with my sed rate, crp, positive ana, fever/chills of unknown origin but she wasn't going to try to put it all together yet. I am so tired...it's the first year ever I don't have a Christmas tree up, not one present bought, etc. Just showering once or twice a week is horrendous and I need a nap afterwards! This is not me at all... sad

Thank you all for any thoughts/comments/insights... Hugs (Sjogren's ruled out, no dry eyes/mouth)

Post Edited (LadyLynda0712) : 12/22/2017 8:29:16 AM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/22/2017 11:22 AM (GMT -6)   
Lupus is "the disease of 1000 symptoms" and presents quite differently from patient to patient. It's usually what they decide after EVERYTHING else is eliminated. Therefore, it takes a while to go thru the entire process.

If you are doubting your rhuemy, I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

PS. Sjogren's can present WITHOUT dry eyes or mouth -- if can effect any of the moist areas or mucus membranes in the body, like in the abdomen between organs.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LadyLynda0712
Regular Member


Date Joined Jul 2016
Total Posts : 30
   Posted 12/22/2017 3:23 PM (GMT -6)   
Hi, thank you, Lynnwood! I did not know that about Sjogren's. I get a lot of sores in my nose (never mouth, though) that really hurt, never thought much about it. I did have a 3mm calcium stone in my salivary gland 3 years ago that caused one of my parotid/salivary bad flares but now no stones and my glands swell up for no reason.

I'm not doubting my rheumatologist because sadly, I haven't been told ANYTHING yet--Sjogren's and Lupus were two things she mentioned during my physical. It has been just weeks of testing, blood pokes (I'm a hard draw so bloodwork is a chore, and those cultures, good grief...I was in the lab close to two hours!) All I know for sure is I have a raised sed rate, high CRP, positive ANA, and a body that is totally out of whack. It's like one thing will pop up, like a parotid infection, so I treat that for two weeks or more, then that goes away and within a week, it will be a rash, a coughing episode that can last days to however long it wants and I'm coughing up blood, that will go away, then I'm in the ER with SEVERE abdominal stuff and vomiting...it just doesn't end. I'm miserable. sad

I will go poke around www.lupus.org and see what I can find out. I was just wondering if some of the symptoms I'm having that I listed above and in my first post are Lupus-type symptoms that you (collectively speaking, as a group) deal with. I just want to put a name to this so I can start treatment of some sort to feel better. sad

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/22/2017 3:30 PM (GMT -6)   
Lupus is diagnosed more by symptoms than by blood tests. Typically, four or more of the following eleven criteria must be present to make a diagnosis of systemic lupus.

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

You may want to read our thread, Lupus 101, if you haven't already. Lots of good info there!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 51
   Posted 12/22/2017 4:50 PM (GMT -6)   
Another very informative site is the Johns Hopkins Lupus site....
https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/
anthonyslupuschat.freeforums.net

LadyLynda0712
Regular Member


Date Joined Jul 2016
Total Posts : 30
   Posted 12/23/2017 5:52 PM (GMT -6)   
Thank you both! smile

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 334
   Posted 1/11/2018 12:57 PM (GMT -6)   
I know this is a couple weeks ago so I hope you see this. So, you are a conundrum to the docs, have a positive Lyme test, and laundry list of Lyme symptoms...

testing for Lyme and other tick borne infections is sooooooo bad. It cannot be relied upon alone to diagnose.

Most doctors are not trained in properly diagnosing tick borne infections. I suspect all of the doctors that are trained in tick borne illness would diagnose you based on the IGM.

I hope you see this and explore further. Come post over in the Lyme boards! smile
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