Gutted that my first rheumy appointment on Jan 26th has been cancelled and rescheduled for March 2nd! I am trying to tell myself that another 5 weeks is nothing when you have waited 25 years to get an appointment in the first place...
In meantime I had my 2 yearly eye test with optician. I mentioned the HLA B27 that I tested positive for as I know it can cause eye problems and told her my eyes felt dry. She stuck some orange eye drops in and said that I do make tears but that they evaporate very quickly. She said that usually it takes an average of 12 seconds for a person to need to blink to lubricate their eye but I take 3 seconds.
Is this something I need to mention to the rheumy do you think when I finally get to my appointment? I know dry eyes is a symptom of Sjogren's but am not clear if that is tears evaporating too quickly or not making tears in the first place. I do also get a dry mouth and lips - my lips also peel all the time. However I also know that being in a centrally heated room could be drying my eyes out!
It's a fine line between making sure all pertinent information is imparted and looking like a complete hypochondriac! You all know where I am coming from!
Did you ask your optician if she thought this was Sjogren's sicca? There are lots of reasons why eyes can become very dry - most common being drugs such as Amitriptyline and antihistamines, also Thyroid disease, Rosacea, Eczema, Diabetes, neurological disorders, ageing - to name the main ones. But as a score of 3 for tear break up/ blink test is well below normal I would say that it's certainly a relevant symptom and test result to list for your rheumy appointment.
What a terrible shame for you they've postponed it - so frustrating when this happens. Could you phone the rheumatology appointments desk and ask for a last minute cancellation perhaps?
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Yes but she didn't really respond. I had managed to get in before the test that my dad does not produce tears and she said it sounded like Sjogren's but as the eye drop part of the test was the end of the appt she was trying to get me out the door. This was the first time I had been to this optician and she was lovely, but very chatty so I think we had overrun a bit! I shall put it on my list as a bit of information I have been given by another health care professional...
Yes, it was frustrating, but not totally unexpected - I had a feeling it would happen! I did consider saying I would take a cancellation but as the husband wants to come it is much better to know when it is so he can ensure he will be free. Last thing I need is to go by myself - I'll be incapable of telling anyone what happened at the appointment and will forget to take my notes out and refer to them haha!
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Okay here's my advice to you, husband or no - take an iPhone or equivalent in set on "record" just before you go in - keep in a pocket of your handbag somewhere close by. This should provide an invaluable reference for you to return to whenever you wish. Also take one A4 sheet with bullet point list of your main symptoms and let the consultant see it (say you wrote it to remind yourself) and offer it to them at the end of the appointment if they haven't already asked for it by then. March will come by soon enough and you will have that much more time to prepare yourself and your husband!
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iphone = Good idea I've started the symptom list already
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Well you're well on track then🙂
Re husbands - I took mine to my first appointment with my second rheum. He was startled by this strange little man asking me to go behind a curtain and strip down to bra and pants. As was I - first rheumy had never done this in four years! I did as instructed but he left me sitting on the exam bed for a good five minutes and I was starting to get chilled but had a suspicion of what he was up to - unlike my hubby who thought this was quite rotten. When he came to examine me he exclaimed to the trainee consultant "ah yes see - livedo on her knees and feet!"
A few days later hubby remembered that he had taken some notes and I looked at his iPhone to find one line saying "she had libido on her knees and feet apparently?" - and that was his entire contribution to this long consultation! X
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haha! Husbands!!
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Great for the sex life though - having libido on my knees and feet spices things up no end don't you know?!
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My husband will be hoping I have libido on my knees and feet too!! x
Yes, definitely mention the dry eyes - sounds like Sjogrens which they can check antibodies for. Sjogrens has similar symptoms and is much like lupus (fatigue, joint pain, etc) but it also attacks mucous membranes, (so eyes, mouth, vagina, etc.)
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I've started the symptom list already 
Sore eyes that cannot tolerate bright light
dry eyes and hair loss
Eyes
Eye question
Punctal plugs for Sjogran's dry eyes
