How long did you wait for results?

[Shaddix29]

Hi all,

Just a question wondering how long you had to wait for results once you had seen a rheumatologist?

I was referred to one as it was suspected that I had lupus, but the rheumatologist said he thinks it is Hughes Syndrome and not lupus. My appointment was at the end of September and he said the blood tests were complicated ones so would take around 3 weeks and he put me on 1 aspirin a day in the meantime.

I still don't have these results. I've tried calling the hospital and gotten passed around but did manage to find out that the results are back but a report hasnt been done yet. And I still haven't heard anything.

My GP had asked when I was going to see the rheumatologist again, but I said I didn't know as I hadn't had any results/letters since my initial consultation and they suggested to contact PALS to chase it up.

So here I am 3 months later, with no idea whats going on and feeling like I'm being a pest trying to chase up my results.

Is this a normal wait? I've never seen a rheumatologist before this so don't really know what I'm dealing with.

I'm having so many issues and just want to feel better or at least have some answers.

Sorry for the long post! Thank you for reading.

[Lure2]

I understand that you are not sure you have Lupus or HS/APS and you are waiting for the answers in blood. You should have had them now I think.

Your GP gave you baby-Aspirin to take and that is good as it is thinning the blood a bit, but it is not an anticoagulation drug. Hope you get your bloodtest-answers as soon as possible.

Best wishes from Kerstin in Stockholm

[Shaddix29 in reply to Lure2]

Thank you

I hope I have my results soon, one way or another.

The rheumatologist thought Hughes over Lupus as I had an odd pattern on my tummy along with being hospitalised earlier in the year with a possible pulmonary embolism that wasn't 100% confirmed.

Glad to know that I'm not just being impatient. Thank you for your reply

[Lure2 in reply to Shaddix29]

That Rheumatologist perhaps is a Specialist of autoimmun illnesses and have perhaps had patients like us before but I can not understand why you have not got the answers.

You are absolutely not impatient and it is important for you to know what bloods they took in September.

Why were you sent to a Rheumatologist? Did you have any symptoms as you were put on an Aspirin?

If you do not get any answers I think you should ask your GP, who kindly asks about your appointment with the Rheumatologist, to remit to do the 3 tests for APS; as follows:

Anticardiolipin antibodies (aCL)

Lupus Anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

These three bloodtests twice within 12 weeks time to get a diagnose of APS.

Stay with us and tell us how it goes for you!

Merry Christmas to you and yours!

Kerstin

[HollyHeski Administrator]

Hi and welcome, as Kerstin states - you should have your results by now and they should be repeated after 12 weeks.

You are not being impatient - ask your GP for help and if need be, get a referral for an APS/Hughes specialist that can be a bit more on the ball to get you help and support. (Top left hand side of forum is a list of recommended doctors).

Hope you manage to sort out soon xx

[GinaD]

I’m here in the States. I had a very similar drama pre-diagnosis. My opthamologist did not like what he saw as he gazed at my retina. Also, he knew I was having migraines. He ordered a cardiolipin antibody test and requested the results be sent to my GP/internist, as I saw the eye doc only once a year. The blood was drawn, but the results were lost. As the migraines increased and my eyesight was compromised by one, I went back to that ophamologist who went into a rage when he found out that the results of the test he had orderd had been “lost.”. He ordered another cardiolipin antibody test, instructed the nurse to send him the bill for the test (my GP told me I could not repeat the test as my insurance company would not pay for a 2nd one.)

So, the reason for lost test results is probably different in my circumstance. But your frustration certainly resonates.

Good luck!

[lupus-support1 Administrator]

There is a great deal of confusion with respect to the "Lupus Anticoagulation" blood. It is NOT a blood test for systemic lupus erythematosus (no such test exists) but a complicated clotting test to determine whether you have the antiphospholipid antibody (Hughes) syndrome, also known as "sticky blood."

The symptoms for SLE are not the same; about 25% of patients with SLE also have APS/Hughes; I am one.

There is no reason (other than bureaucracy) for this length of delay. I would urge you to ask your GP to intervene.

Is this St Thomas' Hospital?

This is quite unacceptable but common.

I am very sorry and no, you are neither impatient nor making a fuss.

With good wishes,

Ros

[AElizabeth]

It’s hard to say why they’re taking a long time calling you with the results. I had to have three positive tests, spaced 12 weeks apart— to render a clinical diagnosis for APS. My first test was a cardiolipin panel where he only tested for one of the three antibodies. That test took about a week to come back, and the result was elevated —enough to warrant having a complete test panel done (testing this time each, IGG, IGA, & IGM). Two days after I had my blood drawn for that test, I got a phone call from my rheumatologist. It too was elevated; I’m about 6 weeks away from having my third test done. This method is used for making a clinical diagnosis when the person lacks any existing clots, yet are still experimenting symptoms consistent with APS.

[Lure2 in reply to AElizabeth]

Hi AElizabeth,

I see you have just joined and if you get a diagnose of HS/APS I hope you get a Specialist to treat you. Also you should know that some of us have got micro-emboli or micro-clots (like me) and they are not showing up on a Scan of today as they are so very tiny but still making damage to our organs.

What symptoms of our illness do you have?

A Merry Christmas to you today!

Kerstin in Stockholm

[Shaddix29]

Hi all, thank you all for your replies. I meant to reply sooner but Christmas seems to have gotten on top of me.

A small update.. I have received a letter from the rheumatologist department. I thought this might be my results but unfortunately it wasn't. It's just another appointment for in July! My GP has said they have left a message for him but no response yet. Fingers crossed I'll have one soon.

[Lure2]

I wonder if that Rheumatologist is knowledable of HS/APS as he does not understand you need help to get an answer and start some treatment.

I wonder what symptoms you have had? You talk of a suspected PE. I also wonder if you take Aspirin to begin with? I think yo should have another talk with your GP who should be able to contact the Rheumatologist and ask what is going on. Not acceptable with the next appointment in July. You must do something about your situation as I understand it is difficult for you now.

Hope you will have a GOOD NEW YEAR of 2018! Please tell us how it goes for you. I hope you will stay with us here as you may get help from other members in your country.

Kerstin in Stockholm