All the tests were negative?!?!

General
1

I called the rheumy’s office to see if I was supposed to go for xrays. As it turns out I wasn’t. The receptionist grabbed my file and said all the tests were back and they have me booked for follow-up in January because the tests were all negative (which bumps your priority down).

Now I’m a bit confused. 7 years ago my ANA was positive when my sacroilliac started acting up. I didn’t ask the specifics because I didn’t know there were numbers involved. I was told it was likely because of the arthritis flare. I was tested a couple of years ago and it was still positive (again didn’t ask for particulars) during another flare.

Now it is negative… Is that normal if you are tested when you aren’t having a flare? All the other test results were normal (accept my platelets which were 122 which is about where they have been lately so somewhat normal for me). The bonescan was also negative which really confuses me. I had a positive bone scan when I was dx with PsA and didn’t have any joint problems, but now that my joints are acting up it’s negative? She also said the MRI of my sacroilliac showed no inflammation… She didn’t mention if degenerative problems were there or not (the rheumy ran the test to see if it was degenerative or inflammatory).

I was always one of those people who had crap show in tests even when I didn’t have a problem. Now that I’m having problems all the tests are negative!!! I’m frustrated! I know many of you have negative tests… I guess I can now relate to your frustration.

I don’t know what will come of my appointment when it comes, but it sounds like nothing with all the tests being negative. I don’t even know if she will still think I have PsA. If they take me off NSAIDs I’m worried I will go downhill fast since they are all I’m on currently and they don’t always cut it. I know if I start a bad flare the tests will probably go back to being positive but I would rather avoid the pain of all that.

2

I understand how you feel. I have had tests show both positive and negative, and some sets of tests with conflicting results. This lead my PCP to do nothing and tell me it was all in my head. I have ordered a copy if all my lab work in the past 10 years (really frustrated the records people when I said 10 years) to go through myself and compare to my journal of when I’m having issues and what exactly it it. I want to see if there is any correlation there. I then going to take that side by side comparison to my Rheumy and see what they say. My last set of lab work I was told showed “nothing remarkable” and when I asked for the numbers on everything, I was told its irrelevant!!! (I scheduled the appt during a flare but had to wait 3 days to go in and I wasn’t as bad then.) So I am kinda in the same boat there…

3

All my tests are negative too. The flare symptoms I was having are gone. I hope they don't come back. I am at a loss as to what was causing all my problems. I will find out if my ANA is still positive when I get the results of the blood work but the rhuemy says that I don't have any of the symptoms of lupus regardless and the flare I had could have just been a virus. I still have nausea almost every day and pain in my abdomen and hip but I have test after test and there is nothing physically wrong with me and no one believes me, I guess. I am at a loss. I am giving up on trying to find out if there is anything wrong with me and accepting that the physical symptoms I have are just from stress or something. It's frustrating but there don't seem to be any avenues left to explore. Supposed to have cat scan tomorrow to see if there is something internal causing the abdomen/hip pain but am going to have to cancel because I have no one to watch my daughter. Sorry you aren't getting any answers either.

4

Hello Roni,

I am sorry for you mate with all your results showing negative it's like a knock in the neck but so many members go through this then you get rheumo's going against their diagnosis in the first but you know your own body and fight the argument out when you see the rheumo and also do what julie suggested get your previous results brought foward from even 2 yrs back to when they first took them and if any flares occur with skin take photo's...well you know the system.

That link that Julie as added is excellent on diagnosis with results..the trouble with Lupus and it causes so many upsets among members is through the blood fluctuating and showing false reading half the time.

My heart goes out to you Roni with how bad you are...A large hug from me. xxx

5

Just to let you know I had a perfect butterfly rash and symptoms but all tests were always negative. I was treated fairly often for severe allergies with steroids. They now think that years of steroids may have contributed to false negatives. Ultimately I went to a university hospital 12+ years after first becoming ill. They decided to do a small skin biopsy on my face - it came back positive for lupus. While it is unusual to be negative for years it is not completely unheard of. Keep in mind some doctors do not know what to do when you fall into that 5 or 10% that continually come up negative. That's a good thing because you also don't want to be misdiagnosed. I would rather they be sure. If you suspect this is what you have be diligent looking for doctors and just do what you can to help the condition - minimize sun, fluorescent light exposures, eat healthy, get rest, etc. Best Wishes!

6

Thank you for your responses. I’m not sure what I have to be honest. My dx are ITP (autoimmune destruction of platelets) & Psoriatic Arthritis. The ITP was dx’ed when I was about 19 (so 20 years ago) and the Psoriatic Arthritis was about 15 years ago. They started testing me for Lupus when I was 16.

I had been on NSAIDs (taken just when needed) up until about 7 years ago. At this point I was on NSAIDs constantly. My sacroiliac joints became very painful. I couldn’t stand upright and couldn’t sit for more than a few minutes at a time. I was sent to a rehab doctor (wait times for the rheumy were 1 year). He took me out of work and sent me to physio for ultrasound treatment. My ANA was positive at the time. After a couple of months I was mobile again and went back to work part time. After about a year part time I quit and started working for my hubby because I knew I couldn’t go back full time and they were pressuring me to.

2 years ago I started running a fever and was really achy. After a couple of weeks I went to my doctor, he ran blood and my ESR was high and my ANA was positive so he increased the dosage of my NSAIDs. That seemed to do the trick.

Throughout I have had migrating joint pain (literally one joint in the morning and a different one later in the day… It’s crazy!). Consistent problems with my hands & feet, lower back and hips. Random boughts of tendonitis that leaves a joint immobile for anywheres from a day to a week (wrists, elbows, shoulder, knee, groin, ankles). I get “puffy” but don’t have specific joints that swell (fingers will go up 3 ring sizes).

I am fair and burn very easily, even with sunscreen and clothing on. Sunburns swell, blister, scab and leaves horrible spider veins. The weird part is the swelling and burn goes away the next day (the redness and swelling) and just leaves the blisters and scabs. The sun has always given me horrible migraines. I am an “indoor” person and really don’t spend any time in the sun because of the migraines.

I have travelled south 4 times. Every time I became sick. I had pitting edema to the point of extreme discomfort (skin was stretched so tight it was uncomfortable and felt like I was walking on marbles). Migraines were intense. Got weird rashes on my feet & ankles (related to the edema?). I had a raised red swollen patch of skin on my thigh about the size of a saucer (benedryl cream seemed to help). Even with sunscreen (SPF 50) I burned. (yes I was the Canadian tourist on the beach in capris and a t-shirt in 100 degree weather! LOL).

I have slowly been getting flakier and flakier (maybe it’s an age thing but I’m only 39). I have a very bad short term memory. I repeat myself because I can’t remember if I said something or not. I forget whole conversations. If I don’t write things down I don’t remember them. It’s like if I see it in writing then it will stick in my head (hope that makes sense). This is bad enough that my hubby and girls tease me about it all the time. I forget why I’m at the store. I drove to work one day and ended up at a place I hadn’t worked in over 5 years! I could go on and on! I don’t know if this is normal or not but when I was in my twenties I was known to have a fantastic memory (to the point of it being remarked upon in work evaluations) and it’s just gone now.

I’ve had many random boughts of inflammation. Optic nerve, aorta, pap tests, etc. These were all found in routine testing and i didn’t have any symptoms. I’ve also had random patches of weird skin… But usually heals pretty quickly. Dentist has told me I have sores on the roof of my mouth… They don’t hurt though.

So what is wrong with me? I don’t have a clue but I don’t think this is “normal”.