I've said previously that my appt with a rheumatologist is in January. My primary physician took blood samples which did not confirm Sjogren's, so I'm on hold mentally till I see the rheummy. In the meantime, waves of fear wash over me from time to time during the day and is taking an emotional toll. What should I expect with a SS diagnosis? I'm treating dry mouth with Biotene and it has pretty much cleared up the sores. I see the opthmologist in three weeks for an annual checkup and his take on the dry eyes. Right now the question that haunts me is pain on the right side of my neck. I had mononucleosis when I was 18 and the pain is very similar, but it comes and goes. I'm not sure if it is a result of activity--I type a significant amount on the computer, and I also quilt a lot, in both circumstances tilting my head as I work.
I've never been a hypochondriac, but in trying to keep track of the new symptoms I'm experiencing, I might be on the road to becoming one. Do most people with Sjogren's lead a relatively normal life, with normal activities? It's hard for me to think that this might be the beginning of the end, and I'm not sure if that is even a rational thought. But it is a real thought. How long does it take from first symptoms to diagnosis? I've had dry mouth for 8 years (was on a five-year study for tamoxifen and dry mouth is a side effect of the drug), hoarseness for close to 20 years (though acid reflux also causes this symptom and Prilosec relieves it). The mouth sores, dry eyes are new. Heading down this new road is scary and I'm not easily scared. Does anyone lose vision with this? Independence with this? I'd really appreciate having some answers.
Hi judeimo
Most people with Sjogren's do lead a relatively normal life. SjS is not a terminal illness. You will have read people's stories in here that are pretty extreme but SjS may never do that to you.
SjS seems to be very 'individual'. People don't even have the dryness in common although it's the most common factor.
I was sent to 'core stability classes' because of neck pain. I still don't know if it's SjS related opr not. It could well be postural. I just don't know.
I got a dx 4 years ago. Something has been wrong for at least 20 years. I've brought up a family, retrained, gone back to college and am in work and I think that's a pretty normal life. Without SjS things may well have been easier - but things happen - and no one can predict what or when!
Getting it dxd does seem to be a bit quicker than it used to be, so hopefully you'll not have to wait for 20 years!
It doesn't make things comfortable but it's possible to live with it - and enjoy life too.
If you feel really panicky you should speak to your doc about it. something else may be going on. I'm sure they'd be able to help.
Take care - Scottie :)
Thank you so much, Scottie. I think I can handle that, but losing my independence, I'm not sure. I've been relatively healthy all my life; the possibility I might lose it has allowed me to see chronic illness in others in an entirely different light. I guess we can all get hit with a bombshell any moment of our lives, but we shouldn't live in dread of that moment. I'll hold onto your message; it really helps.
Hi Judeimo,
As with all illness we never really know what the outcome will be. Sjogren's as Scottie said, is a very individual disease. Some of us never progress past the dry eyes, dry mouth and sore joints. While others seem to receive every gift Sjs gives out.
No matter what gift you receive, it's what you do with it that matters. I suppose if I choose to I could sit and let the PN and CNS take over my life, but I don't want that to happen. With the help of my family and friends I go when I can, push myself at times and rest when I absolutely can't go anymore.
The important thing is, don't let this disease rule your life. I know things get really rough at times, but there are so many good times to be had and things to see, I wouldn't miss any of it for anything.
Take care and have a wonderful holiday,
Pooh