Some Advice?

Hi, was hoping i could get a little advice.

I'm a 24 year old male living in the UK, unfortunately have been off work for the past couple of years with some troubling symptoms that i can't seem to get diagnosed for and instead spend much of my time being passed from ENT to Neurology to Gastroenterology for 'further investigation'.

It started off with Dizziness/Vertigo, constant visual disturbances (flashing lights ect), brain fog, fatigue and frequent Migraines. It was originally put down as a inner ear infection (Labyrinthitis) by a GP and sent me to ENT and Neurology after things didn't improve. Unfortunately after trying numerous anti-vertigo drugs and physiotherapy the problem still persisted and was at that point sent back to Neurology. Had a couple more CT scans, MRI scans due to having regular Numbness and Tingling. The Scans thankfully were all clear so they put it down as a 'Migraine' type condition and put me on Preventive Migraine treatment, which unfortunately hasn't had much of a impact on things, symptoms are still pretty much constant. Some time after that i began experiencing alot of Abdominal pain with my existing symptoms, specially after eating so was sent to Gastroenterology for CT scans and Endoscopys, those also were all normal and am now being sent back to Neurology yet again.

I recently read an Article about Hughes Syndrome and was some what surprised by how familiar alot of the low grade symptoms are with what i'm experiencing, I've never had any DVT, Strokes ect though so i decided to visit the GP to get their opinion, unfortunately she wasn't too familiar with the condition but did offer to run me for a Lupus Anticoagulant (LA) test.

Got the test back recently and the results were normal, i understand however that the LA test is only 50% accurate and other tests are required to make a proper diagnosis. So i'm unsure if i should attempt to push to get the other blood tests carried out when i next see neurology or if i should simply just rule Hughes Syndrome out and move on looking else where?

Thanks for any input, sorry for the wall of text haha.

TLDR: Lots of low grade symptoms, normal Lupus Anticoagulant test, should i try to get more tests or move on?

3 Replies

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  • Since you are in the UK you have access to the best APS specialists. There is a link on here somewhere. One of these doctors could help you either diagnose or rule APS out.

  • You should push to have all three tests run as not everyone tests positive to each one or even any of them. Some people have seronegative Hughes syndrome. Neurologists are not our friends TBH and you may be better with a Rheumy or Haematologist.

    Please let us know how you get on.

  • Hi Rams and welcome.

    Your symptoms sound very familiar to me and, no doubt, to many others on here.

    As my colleague APsnotFab has said you need to push to have these three blood tests done and repeated at between 6-12 weeks:

    hughes-syndrome.org/about-h...

    Were in the UK are you?

    We have a list of UK APS consultants and I would strongly advise that you ask to be referred to one of them, as soon as possible. The list is on this link:

    hughes-syndrome.org/self-he...

    Best wishes and keep in touch.

    Dave

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