not lupus? misdiagnosis?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

pretty Brown skin
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/27/2013 9:33 PM (GMT -6)   
Ok, so my problems have been bugging me for quite some time. Rhuemy dx me with fibromyalgia, based on some very classic symptoms thought to be lupus, but "ruled out" by labs. I get rashy, itchy skin after sun exposure,dty scaly scalp, swollen feet and hands that randomly swell with no apparent trigger besides sitiing or standing more than five or so min. I never seem to be rested and always in pain. I have bowel problems. I have chest and lung pains. History of asthma, but heart tests (echo and ekg) negative. My pcp doesn't seem convinced that my heart is working properly, but no tests to confirm. Its driving me nuts. The docs have seen my physical symptoms in person and pics I've taken. I just don't know what to do and I'm soooo frustrated.

Post Edited (pretty Brown skin) : 10/28/2013 6:20:36 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/27/2013 9:39 PM (GMT -6)   
Find you another rhuemy to assess you. Go in fresh and don't tell of your other diagnosis and see what he finds.
If you feel a doctor is not right then you have a right to seek 2nd, 3rd, 4th, and even 5th opinions.
You know something is wrong and you need to find a doctor who will not give up.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 10/29/2013 4:20 PM (GMT -6)   
Clinical symptoms trump labs.  The absence of confirming labs does not mean you do not have lupus...it might.  It is not uncommon for lab confirmation to come weeks, months or even years after symptoms occur.  In severe cases labs usually do confirm.  Get a second opinion but make sure the doc is experienced with lupus.
 
 
Hang in there.  Many of us have gone through diagnosis hell.
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

pretty Brown skin
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/29/2013 7:54 PM (GMT -6)   
I just feel like bc he couldn't confirm lupus with labs he chose fibromyalgia as the next best thing. Ughh

pretty Brown skin
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/29/2013 7:57 PM (GMT -6)   
And I don't feel like so many seemingly random, yet physically visible symptoms can be unrelated. Fibro doesn't explain everything.

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 966
   Posted 11/4/2013 8:04 PM (GMT -6)   
Have you had a double strand DNA test done yet?? It's a definitive for lupus. The high end is a
9 and I'm a 13 so there's no question that I have it. Also there is another test called a
blood speckled pattern which shows immune systems...high end is a 49 and I'm a 250. I have
arthritis, fibro, lupus, heart issues, spine issues, nerve damage and now tremors. Check out
either of these tests.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 11/4/2013 10:29 PM (GMT -6)   
There is a standard lupus panel. An experienced doc can probably diagnose lupus before getting labs. Some cases are difficult particularly if an inexperienced doctor is trying to diagnose.

http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=5182&labCode=QER
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 11:17 PM (GMT -6)
There are a total of 2,973,087 posts in 326,056 threads.
View Active Threads


Who's Online
This forum has 160891 registered members. Please welcome our newest member, kizzykizzy.
326 Guest(s), 6 Registered Member(s) are currently online.  Details
Pistachi0, Chris Topher, The Dude Abides, Proverbs356, huneri, suchatravesty