Hi,
I'm new at this so please forgive me if I sound worried and terrified all at the same time. I went to a Rheumy. 2 months ago, with a positive ANA, and presented with most symptoms of Lupus. He took blood work by the gallons. Put me on Pred. 10mg a day. I went back in 3 weeks and he said that my tests were negative, but he wanted to watch me for awhile. He took me off the Pred. just when I was starting to Perk up. Then I got a cold and started another flare, but it was worse this time. I went to my family Dr. and she said you really need to go see the Rheumy. asap, he needs to see this. So I made another appt. In the mean time I was researching Lupus when I came across Sjogrens, and BAM it hit me, this is what I have. So I walked in with my check list and said, I think I have this. I mean I have the mouth sores, dry mouth, dry nose and dry eyes, skin, you name it. Its dry. He agreed with me and said that he had that in the back of his mind. In the mean time I feel like I've been suffering while he's thinking about things. So he sent me to a Sjogren's Specialist. He told me that I presented with 3 out of 6, blood work negative, and recommended the Biopsy, which I was ready for and did that day. Which was 12/2/10. It really hurt, the way he poked and mashed my jaw and mouth. It still hurts, I've been putting a hot pad on it to make it feel better. He said I didn't produce saliva unless it was expressed, which he said was good, but he felt that I probally had Sjogrens. The Biopsy would tell for sure. I'm so sorry this is so long. I just needed to share with people who knew where I was coming from. The Rheumy. went ahead before I saw the Spec. on Pred. 10mg and Plaquel? My mouth is trying to clear up some, but man this thing hurts....I'm so glad that I found this site. I've read so many things that have helped so far. Thank you so very much for letting me talk. Bless you all.
Sandisue :'(
Sandisue,
Welcome! I think you will find this to be a place to understand you, get information and feel you aren't completely crazy. I think a lot of us have a similar story on how we ended at the doctor's, yours sounds very similar to mine. I am sorry you are feeling so crummy. I had a horrible summer of that before I was put on some meds which have helped some. I know how depressed and scared that can make you feel, I was very low this July as I was terrified of what was going on and the future. Let me just say, I learned quickly that any stress, worry makes my symptoms flood horribly, so try to relax and take it moment by moment.
As I have learned from my friends here, there are many who take years to diagnose, I am still a big question mark. I had similar results as you. (however I refused to do the lip biopsy b/c I feared what you just described) I hope your mouth gets better soon. Talk to your doc about getting on plaquenil. Though I don't have a positive diagnosis, my doc was willing to put me on that and predninsone only for flare ups. I am glad he was willing to treat before a confirmation.
Hang in there! Just know you aren't alone.
Thank you so much for your response. It was so nice. My Doc. did put me on Plaquenil I spelled it wrong. Its only been 2 full weeks and I understand that it take a couple months to see anything. Lets hope it helps. I appreciate your kind thoughts and words. Once I get used to this posting thing, maybe we'll talk again, hope so. I haven't even made a profile. I'll do that tonight, I'm one of the lucky ones that has to work the night shift. Another long story....Yipes.
Thanks,
Sandisue
You are most welcome. I am on month 5 now with plaquenil and it is just now really helping. It definitely helped right away, but I was still have about 6 days of flares every 4 days for the first 2 -3 months. I also had a very stressful situation at work, which was really not helping. I am glad you are on meds. My doc. said it could take 6 months to fully take effect. Good luck! We will chat again. :)
Sandisue~
Here's a big hug from me!((((sandisue))))) ;D
Im new here too, and everyone just makes you feel welcome right off the get go...so post away! I post from my droid cuz I hate sitting behind my pc, so my posts usually have errors cuz my thumbs stutter sometimes;)
Anyways...welcome!
Sha
Welcome Sandisue. Until I was first told that I had Sjogren's, by a neuro, I was worried. When I first heard the word "Sjogren's", I thought that sounded correct. I had no idea what that meant. I searched the web for what this diagnosis means. During that search I came to this site. There are a number of of us that have posted our meds and supplements in the signature area.
Find what works for you to help you manage this disease. Be kind to yourself and take care of your self.
Hi Sandisue :)
Welcome to Sjogren's world. Getting a dx of Sjogren's is always a bit of a shock to the system but, believe me, there is life after Sjogren's!
It's a very individual disease and totally unpredictable. Reading this forum can be pretty scary because it does make people really ill - but it doesn't always. People who are not made really ill by it often drop in after dx to learn a bit more but once they feel they don't need the support any more they drift off and get on with it.
It's important not to anticipate what may happen - because it may not and you end up getting stressed (which isn't good for SjS) and worrying about something that may never come to pass. It's like if I thought about road accidents - I'd probably stop driving.
I hope you find the site useful.
Take care - Scottie :)
Hi Sandisue!
Welcome to the boards!
I hope you fiound the support you were looking here with us.:)
It's good that you finally seme to have gotten a diagnosis and started propert treatment.
Plaquenil is known to help a lot of people with reducing fatigue, joint issues, dryness, rashes, ...
It does take a few months to kick in.
And even if it doesn't really work or improve anything of that, it will still help by making your life expectation 50% better.
And protecting your internal organs.
Hugs and love!
just want to say welcome to our world,im a newbie too,was dx in april but have had the symptons 10yrs,this is a really good furum,everyone is so
friendly and helpfull,if you want any advice just ask away xx
Welcome and a BIG HUG from me!!
There is some relief in being positively diagnosed. I think everyone presents it different.
Took me 6 yrs to get diagnosed but when I was my ANA, SS-A & SS-B were soooo high there was no doubt. But I don't have a lot of the symptoms others here on the boards are presenting. Mine are primarially dry mouth (lots cavities), dry allergy feeling eyes, the bloodwork and numerouse bad " sinus infections - which have cut down a lot due to sinus flushes.". But I got other "spots" in my body that the -ologists are watching so to be honest I don't know what is going to hit the fan.
I can understand worried and terrified. In my 6 yr journey I had one specialist diagnose me with lymphatic cancer but I wasn't sick enough for him. So the minute I presented XYZ symptoms, I was to run to the emergency room. After almost a year of worry and waiting to the roof to fall in, I just finally made the decision to enjoy my life and accept things as they come instead of "to use an old saying" meeting the devil at the door before he gets there.
It takes awhile to get acceptance in your mind to any disease. It does sound like you have a good dr. Lots of us here have either gotten ignored, the run around or basically "duh" doctors that don't want to work to try to help you. Sending you to another dr - Good! Not a big ego or G** complex.
BTW: If the biopsy turns out negative, that doesn't mean you don't have Sjogrens. There are lots of negative test presenting folks on the boards that DO have Sjogrens. I just refer to tests as the positive Ahas for drs.
sounds like the butcher from the meat market did your lip biopsy,, I;m sorry you had to endure that,, and I also welcome you to our band of merry sjogrens suffferers
Sandisue Hun first of all huge ((((((((((((((((((((Hugs))))))))))))))))))))) I have been diagnosed with Sjogren's for 3 yrs now. I was put on Plaquenil almost right away, and yes it does take a few months to level out in your system. My ANA was also positive. I have not had a biopsy done or any of those things. But I have all the dryness as well and right now it's the worst it has ever been. I have sores up my nose, I use a gel for the dryness up there. I have two different eye drops one heavier than the other. my Rheumy said to chew sugarless gum as it encourages saliva and it really does. my hair is so wrecked it is now half the thickness or more than it used to be. it fell out and broke off. all evenly thank goodness and not in clumps. my skin is super dry, you know when you can run your nail across your leg and it leaves that white line? I find the Body Shop Body Butters work great. esp the Hemp one and the Brazil Nut one. I also have to express saliva sometimes it ok other times I have to do it all the time. I find getting in a hot shower is good and express it then with the shower on your throat. it helps if there might be a blockage. my family Doc said you can get little crystals building up and they block the glands up like having kidney stones. but expressing can prevent that from happening esp in the shower. the only downer is the hot shower isn't good for extremely dry skin so make sure you slather a good moisturizer on. I find the normal ones no good as I can feel my skin sucking it all in like a sponge and before I have even finished its all absorbed and like I never put it one. so like I say maybe the body butter. I have also gone on to using Dove for washing with because its 1/4 moisturizing cream. and a heavy conditioner for my hair, also anything that Aveeno makes. for my lips I use Blistex complete Moisture wow this is incredible you can actually feel your lips rehydrate lol. It's in a blue package. hope some of this helps hun xx :)
Welcome to our board!! I agree with Scottie said. Just remember to be kind to yourself, especially durinig the holiday season.
Cricket
Hi Sandisue!
Let me also welcome you to the SJS World and family! Please look around the board as you'll find tons of information about scads of topics that you just might find informative as well as interesting.
I know that you're scared, and I can't say what symptoms you'll develop and which ones you won't (nor the severity), as the others have mentioned, we're all so different and SJS strikes each of us differently. What symptoms you maybe going through, I may never develop. And what side lines me, you may only get it mildly - there is no rhyme or reason to this AI that I can figure.
Oh my gosh, your mouth must be just aching! Yep, had that puppy too, and even though it showed some infiltration, it was ruled negative though (still scratching my head over that one :-\). I don't know about you, but I wound up with silk stitches (3) and they were in my mouth for three weeks (what is it with 3 and my lip biopsy? Ack!). By the time that I got them out, the swelling of the lip had disappeared and the stitches were always getting caught on my teeth (that was almost as bad as the biopsy).
I know others have used heat to help heal the biopsy site, but I used a ton of ice because the swelling was not to be believed...I sure don't wish that on my worst enemy. Thankfully my lips aren't so hypersensitive, nor do they crack & bleed like before; so thankful for that.
Good luck on the biopsy, but I'm glad to hear that your doctor is treating your symptoms.
Take care of yourself -
Patze
Thank you all so much for the Warm Welcome...I appreciate it so much. My mouth is feeling somewhat better, but still sore. It's been a long week, hopefully I know something on the 20th. Have a Blessed Week.
Sandisue :-*
~SANDISUE~ CONSIDER UR~SELF ((((HUGGED!)))) & HERE'S A SMOOCH :-* JUST IN CASE U NEED THAT TOO SWEETS!
i'm new here 2! lets be newbies tagether! YAY US! (i'm sha's twinzie! i'm 3 min older but she calls me her mini me!)
me & her have an appt in jan ta find out the ins & outs! but this site is soooo ~WACKILY WONDERFUL~! all the lil' things that docs make u feel like UR a hypochondriac 'bout...well amizingly enough...they're bein' experienced by tons of other peeps & WOW there's EVEN a name 4 it!
goodluck w/ur journey! & if u want sum1 ta listen...u can message me!
goin' ta hospital 4 surgery 4 my papa taday...hopein' my body co~opperates! talk ta ya later!
much luv & good thoughts!
~*FLUTTERFLY*~
Hi Sandisue,
Also wanted to give you a warm welcome to the Sjogren's family! :) You'll find many friendly, supportive people here. It's been a huge help to me, since I'm just diagnosed in the last few months myself. It can be a lot to take in and deal with. So good to have people who really understand.
I'm sorry the lip is so sore, but glad to hear it's feeling better. And, like Pisces24 stated, it's great that it sounds like you have a good doctor who will treat your symptoms so quickly. Too many of us have some "horror stories" about that you don't want to know, I'm sure. Please keep us posted, ok?
So, again, welcome and sending you blessings.
Melinda
Hi Sandisue
Sorry that my 'welcome' is a bit late! I'm really impressed that you did your own research, and that your rheumy actually listened to you. It's good that he started you on Plaquenil so soon - many of us here find it really helpful.
I really hope your mouth is healing well and the soreness is easing. Let us know the news when you get the results on the 20th.
Thinking of you - Chickpea