4 years on... No diagnosis! Right eyelid swelling!

Hello all, I posted on this forum around 3 years ago explaining my issue and looking to see if anyone has any similar experiences, but thought I would do an updated version now! I'm a 20 year old female, and have been suffering with the same ailment for 4 years.

So let's start at the very beginning... (it's a very good place to start)

In August 2013 I woke one morning to an extremely swollen right eyelid. The eye was red and itchy too, so we presumed it was conjunctivitis. Tried over the counter medication to no avail, so went to the GP. They prescribed me with antibiotics, which I'm fairly certain did absolutely nothing and paul (affectionate name for the affliction) went away on his own. 

Around 2 months later it happened again, more antibiotics. They believed it to be pre septal cellulitis for a time. It then happened again just before Christmas and I was referred to the eye clinic at a hospital near me. I saw a wonderful doctor who was extremely friendly and helpful, she prescribed me with FML which is a steroid eye drop, that seemed to work to some extent. I went back on several occasions to the same doctor when it occurred again, and was given the same steroid drops to use. Whilst being treated at the eye clinic over the course of 2 years, I must have seen at least 7 different opthamologists. All of whom were completely baffled by my problem. One doctor referred me to a consultant opthamologist who sent me for an MRI scan. This came back clear, except for a slight swelling of the tear ducts in both eyes, but the doctor told me there was no cause for concern. 

So, I got sent to an ENT specialist. They had no idea.

I then got sent to a Dermatologist, who again had no idea.

I then went to an immunologist who again, did not think they could help, as although I suffer from several allergies this affliction only ever affects my right eye. An allergy related problem should in reality be affecting them both.

I only ever wake up with this swelling, and it varies in severity. Sometimes it will last only a few hours, and my eye will be back to normal by lunchtime. Other times it can last up to two weeks. There is no way to predict when it will happen, it's not stress related, and it isn't related to me being ill in any other sense either. To put a slight time scale on it, I would say around every 2 to 3 months it flares up. So we're talking nearly 30 times in the past 4 years. It is very painful, and whenever I move my actual eyeball I feel as if there is a tension behind it. However, my sight is as good as it should be (I wear glasses anyhow) and the many opthamologists I have seen, confirmed that my actual eye ball is perfectly healthy. 

Around a month ago it happened again. It got very bad to the point where my mum suggested going to A&E. I was in extreme pain, and the swelling had spread right to my cheek and jaw. I hadn't been to the eye clinic in around a year, because the steroid eye drops were added to my repeat prescription, meaning I could get them in advance and be ready to use them as soon as I wake up. However, they were taken off my repeat prescription, and of course I woke up on a Saturday with it bad, so we ended up at the emergency GP clinic. They sent us to the eye clinic again, where I saw yet another doctor, and had to explain all over again. She asked to see me again in a few days, and gave me the drops to use. These did not work as effectively as they have before.

I returned, and got seen by ANOTHER doctor who asked the same questions and made the same curious noises as every other one has. She gave me a referral to a consultant opthamologist I had seen before. I had that appointment today, and she basically explained that obviously we were having no luck, it's been 4 years, 5 different departments, countless different doctors, blood tests and scans, and we still have no diagnosis. She has now written me a referral to Moorfields Eye Hospital in London. Although she stressed they may have no idea what the problem is either! 

It seems I am a medical mystery!

The only thing that has become apparent in the last year, is that I suffer from pernicious anaemia, and will be receiving B12 shots every three months for the rest of my life.

Is there ANYONE out there that has suffered anything similar?

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