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Sjögren's Syndrome Message Board
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Old 11-19-2010, 08:23 AM   #1
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Not sure if I should be on here as...

... 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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Old 11-20-2010, 08:57 PM   #2
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Re: Not sure if I should be on here as...

I've been diagnosed with Sjogren's for just a couple of years but I don't fit the criteria exactly. My bloodwork almost always comes back clear aside from a high positive ANA. I mostly get dry eye but it was dry mouth following wisdom teeth surgery that started me on the path to finding out about Sjogren's. I've been seen by a few specialists over the past several years before I saw an immunologist at a teaching hospital that was willing to give a diagnosis. That said, my treatment is only symptomatic at the moment and I am monitored on a yearly basis for any changes.

As I understand it, rheumatologists and immnologists are the specialists to see about Sjogren's. You'd probably also want to see an eye specialist if dry eye is causing significant problems because it can cause eye damage if it's left untreated.

Do you use any tear replacement products for your eyes? There are a number of them that are OTC. For more severe dry eyes there are gels that are supposed to be helpful. I'm not sure if that's available OTC everywhere but it is in Australia. There are also products for the mouth and vagina available although some might be only on prescription. I mainly use the tear replacements that come in the individual vials as was recommended. They don't have preservatives and are better if you need to use them long term.

You might want to ask about reflux as a cause of your cough.

 
Old 11-24-2010, 09:03 AM   #3
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Re: Not sure if I should be on here as...

Thanks for the reply and all the information. My doctor suggested that as it wasn't showing up in any blood tests it could perhaps be anxiety especially as my mouth often feels dry but is actually wet. I'm still not sure which is why I've asked if he could refer for me a Schirmer's test but it makes sense. A lot of the symptoms of anxiety match mine. The funny thing is I have had problems with anxiety and depression in the past but I feel fine at the moment. I'll try and get some help for it and if it doesn't clear up the dry eyes and mouth I'll go back to the Doctor.

Thanks for your help again.

 
Old 12-06-2010, 09:08 PM   #4
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Re: Not sure if I should be on here as...

I am newly diagnosed so I am just learning, but I was diagnosed through blood tests. My GP ran the ana, ssa, and ssb panel (not sure what panel it is). I have read that it can be difficult to get diagnosed. I would go see a rheumatologist after having your GP run the blood work.

I have dry mouth, dry eyes, fatigue tingling in hands and feet, joint swelling and pain, sacroilliac joint dyfunction (muffed back), brain fog, migraines, etc. My doc ran the tests on a whim cuz I presented with thrush and I'm only 35 so she thought it odd. She thought my mouth was probably dry so ordered the tests. It can present in many different ways and go along with outher AI disorders.

I hope you feel better!

Sha

 
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