Hey everyone! Sooo lots has happened since last coming online.
Seen rheumatology who was happy to discharge me based on bloods returning back to normal.
Then saw dermatology who took one look at my photos and my eyes that were currently in a bad flare and wanted to start me to hydroxy because she’s sure it’s lupus.
To then being taken back by rheumatology because of this outcome and along side my intermittent prolonged fevers
To now my rheumatologist asking for a second opinion from a connective tissue disease specialist meanwhile sending my bloods off to London for genetic testing for somthing called periodic syndrome.
Seeing opthamology who have diagnosed me with episcleritis -?inflammatory
So now my ?diagnosis has changed again to the following
?cutaneous lupus
?inflammatory eye disease
?periodic syndrome
Anyone every heard of periodic syndrome?
This one is once again completely new to me?
Hope everyone is as well as they can be. X
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BabyOleg
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What a back and forth you’ve had babyoleg… this is the frustrating part of the process I think, being passed from here to there with one professional saying no and the other saying yes.For me I find it exhausting and reading your post I can sense how long the journey is feeling for you.
It’s certainly positive that they have some working diagnoses/impressions on what your condition could be. Hopefully more light can be shed on this in the near future with the return of your bloods etc. Have they been sent for genetic testing to look at the periodic syndrome?
It’s so difficult when our symptoms and results don’t fall clearly in to one box and therefore leads to lengthy diagnosis etc.
I have all fingers crossed for results for you soon and hopefully the hydroxy having some effect x
It is becoming exhausting - You think your finally getting somewhere and then someone pulls out another possible diagnosis and the testing begins again. Haha! My friend jokes with me now saying there isn’t many departments left now for me to be referred to haha!
At the same time I still remain a medical mystery. Some days I do just wish that just once my bloods would throw off somthing useful.
Yes there doing genetic testing for this periodic syndrome thing. Iv tired googling it but my brain can’t get round all the science behind it so I have given up trying to work out what it is lol.
I haven’t been started on the hydroxychloroquine yet because I was pregnant at my last appointment. Unfortunatly I had a missed miscarriage - so just another blow on top of everything.
I think with the stress of everything my eyes have not had any time to recover and have been in a flare for over a month now - even the prednisolone isn’t having an effect.
I could do with a body “reset” button.
How are you? X sorry for the esssy I am recovering by a lake in France and have too much time on my hands haha
Did you use hydroxy? If it helped then you could deduce you ha e some autoimmune disease. Also never heard of periodic syndrome but will look it up on google.
Hydroxy will be new to me - there starting me on it but I haven’t started yet. No my bloods keep coming back fine except my hemaglobin levels go really high and my kidney function keeps dropping low, then self reverting back to ok, then drops again. So yeh I think she knows somthing isn’t right and is trying find out what it is. Naproxen was helping with my inflammation in my eyes but since I stopped it they have been constantly in a bad flare. It’s wierd I have so many symptoms but my bloods say a different story. I have active inflammation but not in my bloods - dermatology say it can take years for bloods to play catch up but I think everyone is just really puzzled as to what’s going on. I have a long list of differential diagnosis now - porphyria, SLE, CLE, behcets, periodic syndrome, but I just don’t quite fit the perfect criteria for each one - I’m a medical mystery apparently haha - I laugh but it’s frustrating because I actually just want to go back to the way I used to be. An active healthy young adult. Now I’m more of a 31 year old veering into her early 80s some days
Do you have high ANA , any autoantibodies? Google says that periodic fever syndrome doesnt have autoantibodies involved. Is that why your doctor is checking you for it?
Bless you, it is frustrating and demoralising to be passed back and forth but at least there are positives. You are not being dismissed and they are looking into your symptoms. I have never heard of periodic Syndrome I just had to look it up. I really hope you get answers and treatment to help you. Please let us know how it goes. Good luck xxx
Look at the story of carys. Think she was diagnosed with stills disease in the end if I remember correctly. But I'm sure periodic fever was a possibility X
Ouch, I've had episcleritis too, also double vision in my right eye after bad migraines, they kept asking if I'd hurt my neck, told them it was completely out of the blue, no injury whatsoever.
I have artificial tears prescribed for dry eyes, no eye problems (except for the dryness) since then.
I also have cutaneous lupus (discoid lupus).
I hadn't heard of periodic syndrome until now, looks like they're looking into the fevers you're experiencing, if it
comes back that you have it I'm sure they will want to monitor your symptoms as it is autoinflammatory.
Unfortunately it's unusual to have just the one autoimmune disorder so if you've got one chances are you have another
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