Looking for a diagnosis.

[BTR1963]

Hello, I’m a 60 year old man. I’ve been diagnosed with triple positive Antiphospholipid Syndrome for over 10 years. Increasingly I am having spells of fatigue that are quite overwhelming and generally feeling very weak and unwell.

I have recently had ANA tests which were positive and I have had two extremely positive dsDNA tests. I have severe joint pain, mainly in my legs, but increasingly in my other joints.

For the last 2-3 weeks I have felt particularly rough. At the moment walking 100 metres is like completing a marathon. I have also developed a rash on my chest and neck.

I saw a rheumatologist a couple of weeks ago, I was referred by my APS consultant who first did the dsDNA and ANA tests. He repeated the dsDNA and it was 7 x an acceptable level. He also sent me for joint X-rays (awaiting results) but he told me he didn’t think I have Lupus. I know from reading about this disease that my symptoms seem almost classic. Just how difficult is it to get a diagnosis and be taken seriously?

[Chris21]

Hi BTR, sometimes it can take quite a long time before you actually get a diagnosis. I got sick of being told, it was all on my head over and over again. if your rheumatologist says ‘doesn't think’, thats not bad so far because its not been a definite not.

if you’re still waiting for results of x-ray then they may not want to commit to a diagnosis until all the facts have been gathered. A lot of the symptoms overlap with other auto immune disease and some may need slightly different medication.

once i got a diagnosis i didnt just get lupus sle but many others attached that was a bit mind blowing as i had never heard of some but over time ive learnt a lot but still can never work out with one causes pain/ rash etc.

Hang in there I hope its not too long before your next appointment and you get a diagnosis. if they still say ‘dont think’ then ask ‘well what is it’ ? 😉

[BTR1963 in reply to Chris21]

Thank you for your replies Chris and Mary. I have just found out that I’ve a follow up, face to face, rheumatology appointment on 30th September. That does seem like a long way off, but hopefully I’m getting somewhere.

Everything I read (and I’ve been doing a lot of reading!) says that the dsDNA test is pretty specific for SLE. A high percentage of people with APS also have SLE. As you both have said, if it’s not Lupus, then what is it? I know I’m not going mad!

[Chris21 in reply to BTR1963]

it seems all nhs appointments are months away now, which doesn't help when you're not feeling great. i too have APS as well as sjogrens and then along came PBC. If you feel you're getting worse, you can always get your GP to expedite the appointment.

[BTR1963 in reply to Chris21]

To be honest, I’m happy that I’m being seen again. My APS consultant at UCLH is the one referring me on, I get the impression that the GP is overwhelmed at the moment. I’d probably wait longer than 6 months for a GP’s appointment!

Thanks again.

[marypw]

I agree with Chris above because dsDNA is pretty specific for SLE - if the rheumatologist says it isn’t SLE - do ask what it is!

[MusicalFurbaby]

Hi BTR, unfortunately for many of us it took quite a long time to get a diagnosis. One thing that helped me was getting a second opinion, as my first rheumy was reluctant to hand out a diagnosis—even though my bloodwork was positive and my symptoms matched! Hang in there, keep taking the tests and seeing the doctors. It will take them a while to rule out all the other possibilities and confirm a diagnosis. In the meantime, feel free to vent on here, we know what you’re going through! 🌻🌈

[BTR1963 in reply to MusicalFurbaby]

Thank you, yes, I’ve been reading up on how everyone seems to have been put through the same long winded process. It seems to be the norm.

[MusicalFurbaby in reply to BTR1963]

It shouldn’t be, but it is. One of the many reasons I’m so grateful for this support forum!