Hi Sue
Thanks for taking the time to explain your circumstances. I really appreciate it and it really helps to hear other people's experiences. You've been through the mill, as they say! I'm sorry you've had to go through all of this, it must have impacted on your life generally and basically you've been affected in some way since early childhood. Now that I've been on the site a couple of times, I'm seeing more and more that this isn't an occasional experience, it's the common one, especially for women. I don't understand why awareness has not improved over time. You must have felt like you were going mad at times. It's great that your GI doc was so good and you finally found a good rheumi, but a shame that you had to wait so long and go through so much.
Personally, I thought I was somehow causing my symptoms and that I was neurotic - and that's how the medical professionals I saw mostly treated me. It was the severe uveitis that brought some clarity to what was going on. Unfortunately, I live in the N Ireland. I love the NHS but you are more or less stuck with whoever the medics are in your area and there is very little understanding of this condition here, as far as I can tell anyway, also each doctor is very careful not to 'step on the toes of others' - it's a small place and very insular. If I could, I'd go to see Prof Ebringer but that's not possible. I'm going to try to manage my symptoms through diet mainly. NSAIDs are out due to gut problems and steroids due to potential glaucoma, plus I just want to find a non-meds way of dealing with this, if i can and if I can stick it. I don't have any faith in the doctors now.
I get the dry eyes (and mouth) and the rash on my lower legs too, by the way.
Hope you are getting things under control now.
Best wishes
Pauline
