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Most awful NHS appointment ever

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  • #16
    Hi Lizlou, thanks for your message and support. Never been to a rheumatologist but just had my first blood test today since this all started. I asked what was being tested and she said it was basically the full works, thyroid liver kidney, looking for inflammation, b12 and some other things. I feel glad to have got that done, even if it produces no results. I would like to PM you if that's OK, to ask about your experiences with doctors and any treatments you have had. Xx

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    • #17
      Tear film environment disrupted by introduction of a contact lens. A practitioner describes the signs, symptoms and treatments for contact lens-induced dry eye.
      Ocular Surgery News U.S. Edition, July 1, 2007. Amar Agarwal, MS, FRCS, FRCOphth http://www.healio.com/ophthalmology/...a-contact-lens Thank you to the kind doctor who put this article in his newsfeed for us. Interesting - 'If the patient presents symptomatically and objectively as a dry eye patient but has a “white” noninflamed conjunctiva, the use of goblet cell-mucin enhancers in the conjunctiva with lacrimal gland stimulus, ie. cyclosporine, would be considered appropriate. If the patient appears with a “red” inflamed dry eye, then intervention with steroids would be deemed more appropriate.'
      Paediatric ocular rosacea ~ primum non nocere

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      • #18
        Very interesting, Littlemermaid, thanks for this. Not great news for those of us with an inflamed dry eye surface that can't use steroids though

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        • #19
          Unicorn, I don't think it's a very thorough article. There are certainly other meds x
          Paediatric ocular rosacea ~ primum non nocere

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          • #20
            Hi Sharon, did ou have these tests done with a rheumatologist? X
            27, pinguecula, dry eye, Wirral, UK

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            • #21
              Hi Cathy, no it was just regular first line blood testing at my GP practice.

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              • #22
                Can you get CLIDE from just 3/4 years of soft contact lens wear? I have been querying this at my appointments but I've been told it's unlikely... It would explain something though. I noticed that my dry eyes got even more dry after I stopped wearing lens full time between August last year and January.

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                • #23
                  SharonS it is very interesting that you say your eyes got drier after you stopped wearing your lenses. I wore soft contacts for 19 years with no problems or symptoms of dryness whatsoever- it was only when I went from full time lens wear to part time that my eyes began to get dry and then when I became allergic to my lens solution, my eyes spiralled out of control. It is interesting that my ophth thinks my lenses were actually ******g my symptoms prior to this. He is now suggesting I look into mini sclerals which I was happy to discover my local optometrist is now able to fit.

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                  • #24
                    I understand your frustration and anger, esp about being only young and going through this! Im 24 aswell. And even if I have a 'good eye day' there isn't a moment in that day where I think about what has happened to me. I look at other people my age and wish I could be like them again.

                    My experiences with the NHS have overall been similar.... one consultant even said, I quote 'You read the internet too much'! Well of course I do! I want to fix this.

                    Personally, I think my dry eye may have been caused by something hormonal. I have read before about eyes having hormone receptors, and I seem to think my eyes get better around mid cycle.

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                    • #25
                      Hi Gemma,

                      Thanks for your reply. Yes, it is the most challenging thing I've ever had to go through and everyday I feel like I can't believe this has happened to me. Do you have a diagnosis? I recently went to see a brilliant doctor who suspects ocular rosacea and possible hormonal imbalance due to 2.5 years with progesterone implant. Possible immune dysfunction but he suspects hormonal imbalance more strongly. I have been prescribed FML, chloramphenicol and cyclosporine. Struggling to get access to the latter at the moment. I am in a lot pain but by far and away it is the redness that causes me the most misery. It is getting worse and I'm so embarrassed, i keep looking at people's eyes (old and young) and my eyes are just awful compared to theirs. I used to have such nice eyes ahhh and they are very big so these red veins are so obvious, I wish I could just shrink them somehow. I feel truly miserable and can only hope for improvement someday. Xx

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                      • #26
                        Hi Sharon,
                        I am sorry you are having so much trouble. I have Ocular Rosacea and diet is a huge factor in controlling inflammation and redness. I can't remember very well these days, so if I've already told you all of this, forgive me. I have Ocular Rosacea, and must follow a strict diet that eliminates Rosacea triggers, foods high in histamines and foods that are histamine liberators. I couldn't figure out why foods not on the Rosacea list were bothering me, like coconut and coconut oil. Both are histamine liberators. Below are food lists if you want to give it a try to see if food makes a difference for you. It takes awhile for your body to clear the other foods out of your system, but it just might help. You will need to experiment. I eliminated everything on these lists, and then added things gradually over a long period. Sugar and all dairy products are also out for me, although I ate cookies yesterday and today and am having some eye problems. Vanilla and wine are killers as are dairy products.

                        Rosacea triggers: http://www.rosacea.org/patients/materials/triggers.php
                        Foods high in histamine and histamine liberators: http://www.michiganallergy.com/food_and_histamine.shtml

                        Best wishes to you. I hope this will help, and that you feel better soon.

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                        • #27
                          Hi LaDiva,

                          Thank you for your kind message and support. I have recently been advised to do a SIBO diet plan for 3 months. It is very basic, mostly vegetables (non starch), meat, eggs, and a little fruit. I believe I am intolerant to dairy and/or gluten as when I avoid eating them for a period of time, my stomach feels so much better (no improvement in eyes though). I didn't consider histamine rich or histamine releasing foods. What is the difference between the two? The majority of foods on those links you posted I have been advised to avoid, some like avocados I can introduce after 3 months to see if there is any response to it. I know food is a major trigger for a lot of people so I am determined to see if I can find out if makes a difference to me. How long did it take to discover your triggers? how are your symptoms at present? I am having a series of bad day after bad day and just want one good day to motivate myself - things can get better hopefully! xx

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                          • #28
                            Hi Sharon,
                            You are very welcome. It sounds like you have a great diet plan, and I hope that it will help you. Histamine rich foods are foods high in histamine, and histamine liberators are foods that encourage the release of histamines stored in the body. Last night I ate those cookies again and this time broke out in hives. Looking at the box today, they contain high gluten wheat and barley flour. Some foods on the list have more impact than others, but generally I must avoid all of it. It took awhile to notice a difference. I don't remember exactly how long, but eliminating foods had a huge impact on inflammation. I was left with the question "what CAN I eat?" Chicken, hamburger (which doesn't bother me as much as a steak), turkey, pork, lamb, yams, broccoli, zucchini, celery, lettuce, cucumber, carrots, gluten free oatmeal, pecans, almonds, unsweetened almond milk, coffee, camomile tea, cinnamon (thank God), garlic, onions, salt, almond butter (like peanut butter), blackberries, green apples, and asian pears. I also buy a bread at the health food store that doesn't cause problems. It is whole grain sprouted spelt bread with no chemicals or preservatives. Since you are in the UK, you probably won't find the brand there, but it is Berlin Bakery out of Berlin, Ohio. Hopefully you will be able to eat a greater variety of foods than I. If you have been reading Sazy's posts about detox, I suspect she is on the right track and that we somehow are having problems digesting and processing what we eat. I am not very scientific, so don't really know the answer, but I feel something is haywire with my digestive system. You might also consider a good probiotic if you are not already taking one. I use Dr. O'hirra's and buy that at the health food store as well. It needs to be refrigerated. Best of luck! I am rooting for you, and suspect things will get much better for you, but it is going to take awhile.
                            Last edited by LaDiva; 24-Aug-2015, 13:08.

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                            • #29
                              Hi LaDiva, thank you for that very informative post! I absolutely love food, it is my passion but if someone told me my eyes could go back to normal with diet I would be happy to drink only water and eat boiled chicken and carrots for the rest of my life!! No doubt about it!! I will certainly give it a go and try my hardest. Yeah I have been reading Sazy's posts, now doing it with the help of a naturopath as I was lost myself. Thanks again!! Hope you have recovered from the cookies! I am waiting on my supplements to arrive then I will start (!!!)...currently having a cup of tea and a chocolate biscuit with sore eyes lol xx

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                              • #30
                                [QUOTE=paalnoma;97677]Hi SharonS

                                I live in England and I experienced nearly the same thing. My GP also "dismissed" me. I understand your pain.

                                My story is that after realising that at least at that stage NHS could not help me, I seeked help through the private sector. I got a pair of scleral lens through private route.[/QUOT


                                Morning,

                                Did these lenses work? Do they come in prescription form or just clear lenses..where should i look to get some?

                                Thanks in advance

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