So today at the office I downloaded a medfocus guide on sjogrens and while it has a wealth of info it was scary; one example: "if you have vasculitis you have a greater chance of lymphoma" (I do have those lovely purple patches near my ankles). My first follow-up since the diagnosis is Friday. The reading has made me more prepared for the visit. I know the serious complications are rare but so new in the diagnosis I'm almost expecting that I'll be the rareity. Just venting here to folks I know have experienced this before. Any word to the (not so) wise is appreciated.
Hi Bob
It's so hard to know how to deal with health information on the internet. It's good to be informed but the scary stuff just leaps out sometimes. When I first read about the increased risk of lymphoma I was pretty shocked by the statistics, but then I thought that at least it means that we get checked out for it routinely. So if it does develop it can be dealt with quickly.
I'm sure you've got a long list of symptoms and questions for your visit on Friday. Maybe you could add a question about lymph issues? It would be useful to know how often they check you, and what you should be doing yourself to minimise the likelihood of developing lymphoma.
Will they start you on meds on Friday? You'll find lots of really useful information about adjusting to new meds and dealing with side effects here so let us know how the visit goes.
Good luck for Friday.
Hi Bob :)
Statistics are funny things. A small proportion of the population develop lymphoma. A small proportion of the population develops Sjogren's. Sjogren's slightly increases the likelihood of developing lymphoma but most Sjoggies don't. We are much more likely to get hurt in a road accident than we are to develop lymphoma but that doesn't stop us driving - does it?
I've read that if one does develop lymphoma it is pretty treatable.
There's lots of info on the internet. I remember reading up about Sjogren's when I first heard about it. Naturally articles will go through all possible symptoms and complications but its important to remember that not everybody will develop even half the symptoms listed and only the very unlucky would end up with the whole lot!!
Take care - Scottie :)
Vent away....I know its a scary thing...but remember that we all go through this thing in very individual ways...we develop different symptoms and at different times....some get better...some stay the same and some get worse from when they were first diagnosed. I know its easier said than done...but try not to worry too much about it right now! Just ask the doc all of your questions and concerns and educate yourself from reputable websites.
Good luck on Friday....keep us posted!
Thanks Channa, Scottie and Lynmarie. I guess a one good thing about having a disease where the vast majority are women is that I'll be around women, who are are more level-headed about health stuff :). So far all I've had is the return phone call with the rheumy saying "you tested poz for Sjogrens". She did order a full blood panel, etc etc at time of that test so I should have plenty of info Friday. And I have written down some questions. I don't know about meds. I'll listen to her advice. I've had some days where the fatigue is (almost) non-existent and that's my major symptom. But if she advises it, I'll probably go along.
Again, thanks for replying and look at this post Friday PM as I'll give a report!
Bob, ask your rheumy for a copy of your test results. It will be easier than you trying to remember it all. Then the next time your blood work is done, you will have something to compare it with later. I always get in the car to go home and think to myself, "What did he say about this or that?". If you have a copy you can always refer back to it.
Good luck on Friday, we'll be looking for your post.
Pooh
BOB
Im still awaiting tests etc, NHS here is slow to get you to see docs, but i dont know that as a recently discovred sjogrens candidate, that the fear on reading all this can lead to symptoms flaring up life a camp fire and now i am more calm im in les pain.
Way i get through these time sin my head is to say , well if you leave home your more at risk of getting run over, if you breath youve more chance of coughing, if you have sjogresn youve more chanc eof this and that
BLAH BLAH BLAH i tell myself when fear hits me, its all academic really, worrying about it will only make matters worse, i take each day as it hits me, and i work myself out a wee plan of action that day, and thats what i do,i am learning fast to deal with the here and now, the future is guaranteed to no one , i could have a friend, who worries about me and thinka they perfectly health and get killed in a car crash and i may very well outlive everyone, who knows, no one in the world does, not just us, life for anyone is a daily journey, and this is what i remind myself, i challenge my thoughts till i overcome them
T x
Thanks; I'll try and focus on other things over the next few days.
BOB
:) its not wrong to get scared, everyone does at times, just keep in mind its a risk not a guarantee, just take it day at a time, and let it out when you need to
T x
Hi Bob :)
A list of questions is a really good idea. It's so easy to forget to ask something, especially when feeling nervous.
It's a good idea to keep a symptom diary too. It helps to keep track of things and meds because again, it's easy to forget when varios symptoms stop and start.
Take care - Scottie :)
It is really scarey dealing with a long term illness. Take a deep breath and take 1 day at a time!