Hello all. I’m new to this community and this is my first post, though I have been reading through the posts for a while.
So, I have been experiencing a lot of multiple joint pain in the last few months plus extreme fatigue. I have had fibromyalgia for ten years now and I had never been this fatigued or this much in pain ever.
I was finally able to score a new patient appointment with a rheumatologist, who found it "interesting " that I have mild psoriasis and a family history of it as well. She said I may have psoriatic arthritis, but she has to test me for other stuff first. So, she ordered low back x-rays and rf, ccp antibody, Lyme disease, hla-b27, hep b surface antigen and hep c antibody.
Great! Let’s do it! So now 2 weeks later I haven’t heard back from office, I decided to contact them for test results, only to get told that they can’t give me the results, but there is nothing urgent and I have to wait until my next visit, which is 3 weeks away!!
Have any of you ever heard of this? What could that possibly mean? I just can’t wrap my head around this.
If anyone has any insights, that would be of great help and much appreciated!
I find this frustrating too. The basic idea is that the doctor wants to discuss the test results with you. Why can’t this be done over the phone? Because then they can’t charge you for an office visit. Ugh.
There are some doctors who will talk over the phone with patients, and some who won’t. Other doctors will release test results so that the nurse can convey them over the phone. And others who you need to come in. It doesn’t mean anything bad. It just means that unless it was something that needed action right away, it needs to wait for an appointment.
Thank you, Stoney, for answering. I was never aware that this is a common practice! What’s wrong with putting the patient’s mind at ease by letting them know the results, then discuss treatment at the appointment?
It’s not like we can get the treatment on our own, we are definitely going to show up for the appointment.
Very frustrating indeed.
Do you think though, that if all the results had come back in the normal range, they would have told me ?
I’m not really worried, I just need to understand what to expect.
Thanks again.
My rheumatologist sends a letter out if all of my test values are fine. I will get a call if anything is out of the ordinary, because I go every 3 months. My GP will call with test results, normal or not. It’s just variable.
Well, rheumatologists have their own “rhythm”. That lack of urgency is quite typical. Up here in The Great White North (Canada) rheumatologists are so thin on the ground, that a month would be fast to get an appointment. Normally, I’d wait three months between appointments.
There is no blood test for PsA, so I’m guessing the blood work she ordered was to rule out other conditions. It’s quite possible as well to have severe PsA and to have blood work that looks perfectly normal. Weird, I know. Just hang in there: it sounds as if your rheum is on the right track. At least PsA has occurred to her, which is more than you can say for a lot of doctors people around here have met. I read somewhere that the average length of time between symptom onset and a PsA diagnosis is between 6 and 7 years! Certainly plenty of people around here have gone down many blind diagnostic alleys, and spent years feeling like hypochondriacs and drug seekers.
All of that said, welcome to our PsA clubhouse, Nermada! It’s great that you found us, although it’s not great that PsA seems to have found you. Glad you posted! Have you found our Newbies’ Guide yet?
Hi Nermada!
When I first read this I assumed the most frustrating thing was having a possible diagnosis, which may or may not have been confirmed following the tests, leaving you on tenterhooks. Is that how it is? If someone out had decided that I had x condition, I know I’d want them to share that key information with me pronto!
On the other hand … perhaps it is good practice to give results to the patient face to face at this early stage in the process. That way the rheumatologist will be able to gauge your response more easily and it could be seen as somewhat more respectful than a phone call.
I think I’d take comfort in the ‘nothing urgent’ comment at least. Incidentally, I often wait up to 6 months for certain test results and have been peculiarly blessed recently in that I never seem to get the results of some imaging!
Welcome! I work in a hospital lab and right now in my hospital there is a discussion about wether or not test results (blood, x-ray etc) should be available right away for the patient to see or if a doctor has to see them before sharing… some say a patient has a right to know, others say patients most likely have no clue what there looking at and a minor thing might have them thinking it’s really bad… maybe your doc decided that he wants to share the results with his patients so he can explain if there is something out of the ordinary… and the nurse never shares the results, except to say there is nothing that can’t wait to the next appointment…
Nothing urgent could be just the standard answer they give everyone when there is nothing urgent… even if everything is normal! Try not to worry. Although that’s much easier said then done…
Thank you, Seenie. I was actually scheduled to see her two months later, but lucked out when someone cancelled and I got in! 
I know, I know, can’t have my cake AND eat it too!! 
Hi Sybil. This is exactly the impression I got. So now I’m wondering is Lyme disease urgent? Was I positive for RF? She said HLA-B27 could be indicative of PsA, is that what came back positive? Well, you get the picture. I have to constantly remind myself that soon enough I’ll maybe have some answers, I just have to be patient.
Hi Cynthia. It’s common practice here to post the results online in your account with a report explaining the findings. I have the app on my phone and am almost always able to see the results as soon as my doctor gets them and reviews them.
I am, however, a new patient to the rheumatologist even though I can see details of our consult on the app, maybe she does things differently?
I would assume though, since they all are part of the same practice, that if all the results were negative they would have posted them.
Thank you, ALL for taking the time to reply! That’s very kind of you.
Nermada, it’s what we do here! Your turn will come to prop some fretting soul up, to pass the tissues, and to listen to some weeping and wailing (and then tell them it’s time to suck it up 
) Then you will discover that taking the time to reach out and support others actually makes you feel better too!
We’re glad you found us, even if it’s too bad that PsA has (probably) found you.
Seenie
That’s the beauty of Ben’s Friends concept of peer support.
Where I live Lyme disease would be considered urgent, because the sooner that treatment is begun the better the outcome. Are you in the northeast too?
Yes I am. After a lot of research, I realized that Lyme disease is in fact urgent. And you just reassured me on that, so one down! lol
Thank you!
It can all be such a tangled web … there’s nothing simple about our disease, and then throw in a second and it’s no wonder you feel stumped!