Recent diagnosis of ?

[UrsaP]

About 4 years ago, I was referred to eye clinic when my glasses prescription kept changing from week to week. The referral was rejected with no explanation. My eyes did settle after some months, and I went from basic reading glasses which had beens stable for some time, to needing verifocals. the following year my eyes were settled. Then nearly 2 years ago, same symptoms, my new glasses order a week earlier were no good, my prescription had changed again. Another referral with the new consultant, was in effect nothing more than another outright rejection with opticians being blamed for my eye changes from one week to the next. A 10 second look in my eyes, and a refusal to acknowledge any form of Lupus or such involvement, was as much as I got. In Dec, following a referral in Feb that was postponed to Sept, I was dismissed from a lupus clinic, stating no connective tissue disorder found following screening. Despite acknowledging Sicca symptoms and AI readings,

I was referred onto eye and dental clinics to assist with the management of said symptoms. I have not yet received an appointment for the dental clinic but attended an appointment last week at the eye clinic. Not with much hope to be fair. However, I was asked questions, listened to (yup! ), eyes examined, etc. And I was told a clear staining pattern associated with connective tissue was seen. I asked was it not just the scarring from decades of ulcers (in one eye only) that they were seeing. Apparently not, scarring is minimal. It is clearly connective tissue. However they were unable to identify what exactly. But said it didn’t matter they could treat it. They could not redo any bloods as ‘too soon’, six months since last tests? ?

I came away with a prescription for several different eye drops and treatments. Amounting to 26 drops a day and a night gel. Plus an heatable eye mask.

This was not even a bad eye day! I thanked the Dr I saw and said I had got further in that one session than I had in numerous other appointments over decades. He said, ‘Sometimes it just takes someone to listen’. Well, isn’t that the truth.

I wonder just what were all the other Drs looking at...over the years? Why are Drs not listening?

A step forward!

[donnabrain]

Sounds a little like my experience. I have antiphospholipid syndrome and was under the lupus unit for years, but was discharged a couple of years ago, also with the same" no sign of any connective tissue disease " ( although there actually is)

My optician referred me to an eye specialist.

They said my sjorgrens had worsened.

I told them that the lupus unit says I don't have sjorgrens.

The eye specialist said they beg to differ.

I have many things wrong with me, and have yet to find anyone who really listens, or joins up the dots, with the exception of the eye specialist who was extremely thorough.

I now have 3 different drops, viscotears for day, lacrilube for night, and steroid drops when flaring badly.

If only everyone was so thorough

[UrsaP in reply to donnabrain]

I wonder just why it is so hard for other eye medics to see? Just what are they seeing? How can they get it so wrong? Likewise, it took me over 10 years to get diagnosed with hypothyroidism, despite seeing a ‘specialist’ over 40 years ago. Even then struggled as normal T4 was useless.

[donnabrain in reply to UrsaP]

Frustrating isn't it

[UrsaP in reply to UrsaP]

Very! It will be interesting to see if the rheumatology dept get back to me, following the report back from the eye clinic.