... I haven't actually been diagnosed with Sjogrens but am pretty sure I've got it. I have a constant dry mouth and eyes that have been gradually getting worse for the past five or six years. I always have a tiny bit of saliva in my mouth but not enough to make much difference. I need water to hold a long conversation and end up chewing gum all day just to stimuate saliva. I don't think it looks nice but it's really uncomfortable otherwise. Water doesn't seem to help much. I'm not one of those people who has a problem with drinking it (I probably have too much if anything) but to give you an example I can have three cups of mint tea in a row (so basically flavoured water) and a couple of minutes later I'm dry again and my tongue's feeling all rough. I also have a dry vagina- not to the point of being uncomfortable and it does get wet if I'm aroused, just doesn't last very long. My eyes often feel like they're lined with hair and blinking can seem an effort. I wake up with gunk in them most mornings. I also have a bad digestive system and sometimes get a really bad cough which scares people and makes them think I'm choking. An ambulance has been called on more than one occaision only for the paramedics to find out that I'm perfectly healthy and my breathing's fine. I find this very embarrassing but often can't talk enough to tell my friends I'm ok. I also get dry skin around my nose (it can feel scaly sometimes).
A couple of weeks ago I mentioned it to my doctor. She said she'd arrange some blood tests for me as "there are a few conditions that can cause dry eyes mouth and vagina". Then she asked if I had any joint pains or stiffness. I know arthritis can be connected to Sjogrens and I said no there was nothing wrong. However I do have a bit of trouble with my knee. I didn't mention because I'm quite active and it's bound to put strain on the joints sometimes. Also I'm very mobile and can run and go to the gym quite easily. When I went away though I realised that my knee often feels heavy as though someone's pressing hard on it. If I'm in the postition for a while it hurts a bit and while I can bend both knees together the right one goes much than the left (the bad knee). It sometimes feels as though it's been locked into place and I've noticed when I lean forward the right one bends slightly and the left stays where it was. I don't know if this is arthritis (I certainly hope not) but the symptoms sound like my mum's who has arthritis in one knee. I'm not overweight which I know can put strain on the joints.
The first test showed that I had an abormal amount of antibodies. I went back for some more (some sort of a protein test and one for inflamation) and phoned about the results today. They all back fine with "no further action required". I can't believe I'm upset because of this result. I don't want to there to be anything wrong but it isn't normal to have this constant dry eyes and mouth and I feel like I've been left in limbo. I've made another appointment with a doctor for next Tuesday evening. It's a different one to the one I had last time but he's all right and I want to get it sorted. I'm going to tell him that I think I have this condition, explain all the other symptoms, tell him about my knee and ask if I can see a specialist.
Thank you for reading this far (if you have done), I now have a few questions I want to ask.
Did this happen to any of you? Were you diagnosed with Sjogren's or something else?
Are there any specific specialists I should ask to see or any questions I should ask the doctor?
Have you got any other advice that you think might be useful.
Thanks in advance for any help you give,
Katharine
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