Thank you for creating this site.
I'm beginning to realize that I have entered into a small group within a small group. I was just diagnosed with Sjogren's. In the last years I have faced RA-type symptoms, acute vasculitis, some chronic bronchitis, various joint and muscle pains and most recently a sudden onset of of acute autoimmune pancreatiis. It was this onset that set two of my doctors toward a full auto-immune panel. Up till now, I've always heard, 'we can't explain why you had this ___fill in the blank____". At least now I have a name of my attacker. As a very active guy in my early 50's, I want to learn how to address/understand/work with/speak to my doctors, etc, about what's going on with me. Any directions for more information will be welcome.
I will be coming to this site regularly, because I need more information about this syndrome. Do we call it a syndrome, a disease, a condition, an illness....what is correct?
Thank you. I'm sure I'll be chatting and posting more soon.
Bill_in_LV
Bill, I call it a plague, a syndrome, the condition from heck, and several things truly unprintable!
Having what my son the shrink calls "a unifying diagnosis" can be very very helpful, in terms of bringing a bunch of weird stuff together under one condition.
I have had dry eyes and mouth, anemia, UTIs, falling, pain, tingling, itching, numbness and coldness of my feet, and on and on.
It's all part of the co-conditions of Sjogren's.
And all are auto-immune conditions/diseases/plagues.
Call it a disease, since most people understand that term best.
I was lucky to have an amazing Rheumatologist who diagnosed the Sjogren's early, even tho' I'm sero negative.
And an amazing gynecologist who caught on to the Interstitial cystitis (a co-condition of Sjogren's which attacks the lining of the bladder)
And I had a nagging headache which took me to a neurologist who immediately saw the I was ataxic and had right foot drop, all signals of my peripheral neuropathy. Which showed up as profound on the Nerve Conduction Velocity test.
I do NOT have a brain tumor, thank god!
And if you read my profile, you[ll see that I take a bunch of meds for everything. I'm still searching for the right doctors to deal with the complexity of this disease.
PLEASE KEEP US POSTED on what happens with you.
This tends to be a condition of women (especially older women). Persevere with your doctors,you will have to educate THEM. Trust me on that!
A good doctor wants to learn from you. And you will know more than the doctor in many many instances. But they hold the keys to testing to diagnoses and to meds. So find good ones.
Keep us posted
Kisses
Carolina
Hi Bill :)
Welcome to Sjogren's world. SjS is very variable. It's very individual to people. It progesses at different rates. Sometimes it hardly progresses at all. Some start with the dryness - others start with aches and pains and the dryness comes later. Some people are really ill with it. They have swollen glands and fevers and organ involvement. Others, like me, don't feel great but are not actually ill as such and can still work and get by.
I think it depends how one feels as to whether it's a 'syndrome' or a 'disease'. Whichever it is - it sucks! ::)
You'll be glad to know you are not the only male in this forum. I'm not male but I'm sure one of the lads will be along soon.
Take care - Scottie :)
Hi Bill,
Let me also welcome you to the SJS World and family! Please do look around the board as there are tons of topics that you might find informative and interesting! And let's not even mention the oodles of great members as well! Remember, that's just between us, right? ;)
Shucks, I don't much care what you call it, just wish someone would call a halt to it! Dang, I'm so ready to give this crap back already! ::)
Finding a good rheumy will be worth your weight in gold, and even though mine drives me insane sometimes, he is a local expert on SJS, and for that I'm very thankful (being sero negative and all). If there isn't one locally for you, can you go to a large medical facility or a teaching hospital (you'll often find a lot of cutting edge doctors involved with them)?
Again, welcome, and I hope to chat with you soon.
Take care of yourself -
Patze
Hi Bill!
Welcome to the site!
I call it a disease.
Looking forward to knowing you better!
Janna
welcome Bill,, as one thathas been told I have SS and now to find out at teh Mayo clinic that I migth not,,, well you can see why we call this thing many names,, I call it a disease,, why its called a syndrome is beyond me,, it does a lot more damage when it gets reved up thenany syndrome I can think of,, good to see another guy here,, we are in a minority,,,
Hi
Autoimmune pancreatitis sounds terrible. How are you being treated. I hope they get it under control soon.
Joyce
Quote from: navydad on May 26, 2010, 11:20:01 AM
welcome Bill,, as one thathas been told I have SS and now to find out at teh Mayo clinic that I migth not,,, well you can see why we call this thing many names,, I call it a disease,, why its called a syndrome is beyond me,, it does a lot more damage when it gets reved up thenany syndrome I can think of,, good to see another guy here,, we are in a minority,,,
I think they call it a disease when there is a specific agent that causes it, with a definitive test that says YES or NO, and symptoms with very litttle variation.... I'm not a doctor, I just play doctor with Mr Meow... :P
Remember the
China Syndrome
when the nuclear plant melted all the way down to China?
Well that is the Sjogren's Syndrome.
When we all melt all the way down to insanity.
Kisses
Carolina
I so agree with you about melting down all the way to insanity!! Sure feel like it with a couple of my doctors, oh boy! ;) :D
Patze
I too am new to this. I was just diagnosed 3 months ago after suffering joint and muscle pain for several months after having had scabies. My PCP felt that it was not scabies what i had but another sort of rash. After running a few test, +ANA and +SJS, iI was reffered to a rheumatologist. He seems to be very good. I am taking 200mf x 2 daily. I also take flax seed and fish oil. The hardest thing to deal with is the fatigue, I have a 2 1/2yr bg that does not understand why i can not play and throw her around like I use to. I have always been very active in sports and now I have to pace my self. What an eye opening experience.
Hi FF Jo,
Let me also welcome you to the SJS World and family! Please do look around the board as there are scads of topics that you might find helpful and informative.
The exhaustion is just maddening to be sure! I don't know how I make it some days, while others are not so bad, so I can imagine that yours must be so much worse with a little one.
You'll find several other parents here (including very young children), and hopefully they'll stop by soon to welcome you as well.
You didn't mention it, but what meds has the doctor put you on if any?
Again, welcome, and I hope that you can stop in and chat soon.
Take care of yourself -
Patze
Hi
Thanks for the welcome. The MD put me on plaquenil and prednisone. It taken a few weeks but I am finally getting some relief from the pain and the fatigue. I was able to stop the prednisone a few days ago. I am very happy about that. I started turmeric, an herbal supplement that is suppose to help with the inflammation, and i think it is helping with my pains, along with the flax seed. I am going back to the rheumy in a month so hopefully my numbers will be better. Hope everyone has a great weekend. jo
Hi Jo :)
Welcome to Sjogren's world. Just be the best Mom you can be. You'll always be your 2 year old's best Mom. They'll never make the comparison's we seem to make ourselves! As my kids grew up I tried, pretty successfully, to get them doing activities that I could sit and watch. It seemed to work OK.
Hopefully you'll keep feeling somewhat better with the pred and the Plaq.
Hope you find the site useful.
Take care - Scottie :)
Hi Bill,
Just want to add my welcome to you as well! I hope you are able to find the information, comfort, friendship, and laughter here that we all share. This is a safe and welcoming place!
Welcome to the Sjogrens World family!
Thank you all for your wonderful welcome. I've been reading through your comments, profiles and I realize that I have connected with a group of genuine people. As a new member this means very much to me. I will make every effort to make the next new members equally welcome.
The vasculitis onsets (have had about ten severe attacks) almost cost me my right leg last June (has healed now) and the pancreatitis attack was sudden and severe in February. The paramedics weren't sure I'd make it to the ER. A friend described it this way... 'at first you think your're going to die, and then you are mad because you don't.' Pretty accurate description.
In every one of these situations, the doctors have said, 'we don't know what caused this.' This seems to be a common message as I read through the postings. Am going to learn from you all, and my next PCP appt, I will ask him to send me to a rheumatologist, though I anticipate that he will be many steps ahead of me. He is determined to get to the roots of what's happening to me.
Again, thanks for your words of welcome.
Grace and peace
Bill