Hi all, I had my results back from the autoantibody tests regarding possible SLE. They were satisfactory which as far as I was concerned meant normal/good so I ignored a letter from my GP saying to come in for another autoantibody blood test, in the next four weeks. As far as I was concerned, I didn't have SLE after all.
But, I started a new job which was psychologically very stressful for me, which I don't need to go in to, but I only lasted 4 weeks. After the first week, I developed strep throat with usual exhaustion, swollen lymph glands, achy body, hair falling out, sores up nostrils and one on inside of my lip, usual rash on chest, but I also had hives all down my arms and right hand swelled up. I thought it was scarlett fever, finished course of antibiotics. But, last week at the new job, I was put under psychological stress. The first symptom was pure exhaustion, following day, tonsils swell up, rash appears on chest burning and itching, body aching, bald patch got bigger, loads of bumps on scalp and itching like mad, body aching. I realised that these were two flare ups, I'm still recovering from the second one. This last flare up irritated m narcolepsy and symptoms presented at my other job, which were sleep attacks lasting several seconds and cataplexy when one of the people I support said I looked like death warmed up! It made me laugh and collapsed onto a chair.
I decided to look up what satisfactory meant regarding autoantibody results. Apparently it means that close to normal and GP not concerned. I should have gone back for my second lot of blood tests. So, this is the second part of my journey on the road to getting an official diagnosis for SLE.
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mumsyme
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According to The Lupus Encyclopedia, a flare indicates increased disease activity within the body therefore it is advised that you are tested for lupus during this time. To find out the specific tests and criteria that are required in order to make a diagnosis of lupus, read our blog article here: lupusuk.org.uk/getting-diag...
Stress is an important trigger of lupus, it is important to give yourself time to relax. We published a blog article on ‘stress management and relaxation which you can read here: lupusuk.org.uk/stress-manag...
Before attending your next appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...
Below I have included information links which I hope you find useful:
Thank you for the information. I had just finished a long course of antibiotics when I had the autoantibody tests. I don't know if that would have effected the results or the dexamfetamine for narcolepsy? I only realised that it was a flare the second time round in such a short space of time and caused by stress. I'm glad I'm not having anxiety because the symptoms would have felt worse for longer.
Also, my GP at who did my first bloods, said it's very unlikely I have an autoimmune disorder as they're rare. This was the same GP who back in 2008 said I didn't have narcolepsy with cataplexy, which in 2015 I finally got referred, had a lumbar puncture showing very low hypocretin. Narcolepsy with cataplexy IS an autoimmune disorder. So my trust with this GP is nil.
You may wish to get a referral to see a different GP. Our blog article has a section discussing how you can change your GP here: lupusuk.org.uk/getting-the-...
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