;D hello! I was recently diagnosed--actually just last week. I have learned so much more in the past 24 hours than I ever knew. I can't say enough on how nice it is to finally be able to piece ALL of my symptoms to one thing! :D
I am seeing a Rheumatologist, an endocrinologist, and my regular internist. The endocrinologist is treating me for Diabetes and I noticed that my feet were burning up and inbetween my fingers. I assumed it was neuropathy, so I told my endocrinologist about it. He also notices my red patch on my face (malar rash) and says that my sugar levels are way to good for it to be neuropathy and sent me to see the Rheumatologist.
Currently she is still trying to figure out and pin down what I have. The last time I saw her she said MCTD mixed connective tissue disease and one other thing I can't spell and Raynauds (sp?) I know I do not have raynauds or the other thing I can't spell, but I can see how she thought that. 8)
She also said she isn't ruling out Lupus. I've only seen her 3 times and I see her again tomorrow. Since that last time I've seen her, I've been to see my internist about my chronic dry eyes, mouth, nose,sinus infection and fluid in my ear. never piecing any of my symptoms together!!!
He says Sjogrens! At the time of the visit, I associated this Sjogrens to my eyes, nose, mouth. period. then I looked it up online!!!! Everything I have......everything, things he didn't even know about was all right in front of me. I just couldn't believe it! Like dorthy seeing the castle of oz! :o I just feel like I might just be able to start getting better now! I've been suffering with these symptoms for 2 years now and never pieced them together as ONE THING!
My joint pain, my fatigue, my painful eyes, nose, mouth. everything, even my burning feet! I can't wait to see my Rheumatologist tomorrow and get going on a plan of action!!! ;D
Thanks for listening!!
Dawn
Welcome to the site Dawn, you will meet a lot of wonderful people here. My 4 year old daughter Jenna has sjs dx thru blood and saliva test. I also believe I have sjs but havent been tested or dx yet. We share a lot of the same symptoms. Im glad it sounds like you have a good Rhumy and I hope they will be able to start making you feel better. Hugs and Kissess Jonnell and Jenna
Hello & welcome Dawn,
I hope your visit to the Rhuemy goes well tomorrow, and that he listens to you and that you get the right treatment.. Too many of us here did not get a very good responce from our Doctors.. please come back and let us know.
You will find good company here very willing to listen, Dolly
Aww Dawn, isn't that a wonderful feeling. Just knowing what the heck has been going on with your body is such a relief.
Now the hard part starts. Please do everything your doctor's recommend for you. Some of the things, like Restasis for your eyes, may bring stinging for a while, but believe me it gets so much better. If you are started on Plaquenil and find it makes you sick to the stomach, try starting out with just one tablet and something to eat. I used yogurt. Then build up to the prescribed dose. If you want my method, let me know, my rheumy gave it to me when I started and it didn't fail me.
It sounds like you have started to gather a good team of doctor's for your care. That is perhaps the best thing of all. Doctor's that believe in you. It will make your journey so much easier. And us of course.
We will be here for you through that journey. Just let us know how you are doing and if you have any questions, someone on here will have an answer for you.
Welcome to the family,
Hugs, Pooh
Hey girl,
I am new too ;D took 10 years to be diagnosed >:(. I am on the right track now though. I was diagnosed by symptoms and blood work so it is for sure with me. I started Plaquenil about a month ago and the doc says it takes 4-6 months. Tap, tap, tap. LOL.
You are not alone for sure, this site has helped me so much.
Hello and welcome from me, too, Dawn.
Isn't it a good feeling when things fall into place, and you suddenly realize that yes, there is a reason I feel like I do?
Good luck with your rheumy, and please, let us know how the visit goes.
Hi Dawn,
Welcome to the Sjoggie family.
A couple of suggestions I have for you: keep a journal of some sort or jot it down on a calendar when you experience new symptoms, then remember to mention these to your doctor at the next visit. (Believe me, one day turns into two, a week, a month and then you have no idea how long you've been experiencing it.) Even if your symptoms seem out in left field, I would tell your doctor about them - it could be one more piece to the puzzle.
There are several books on the market in reference to Sjogren's. You can check them out under the Book Reviews Link at the top of the page, or on the home page. I have six books I reference on and off - they are all good. :) (If you decide to order some, if you order from Amazon thru the link from our site, Sjogren's World gets a small percentage of the sale.) ;D
Shoot, now I've lost my train of thought of what else I was going to tell you. Grrrrrrrr, I hate when that happens! ::)
Again, welcome . . . feel free to ask questions, vent, offer suggestions, etc. We are all in this journey together . . . some are just getting started and others have been walking here for a while. We also have "live" chats during the week - feel free to stop in and join in the conversation. ;D
Bucky
Hi Dawn,
Welcome! I know that feeling of relief when you realize it is not all in your head and your symptoms have a name. I was sick for a couple of years, but just figured it was because I was hitting 40 soon.
Then one day, I typed in the Internet "dry mouth" since I was always thirsty and my teeth were rotting out. Then Sjogrens came up and as I started to read about it, I knew right away. I had EVERY SINGLE symptom!! I went to my doctors and said what I thought I had. Of course, she thought I was crazy. But I begged her to run the tests. The next day she called me to say all my bloodwork was positive (she was shocked) and to get to a rheumatologist. I am so glad I did the research on the Web . . . who knows how much longer it would have been before diagnosis. Doctors don't seem to know much about it yet.
I hope you get a good understanding rheumatologist. I had to go to two before I found one who listened and helped. Like the others said in this thread, Plaquenil is a great medication for SJS. I couldn't live without it!! You will find once you get treatment, things will be a bit better, but you will still have your bad days. Be sure to get the books and read all about it. This website is probably one of the best sources of information (and encouragement) you can get. So keep posting.
Take care and let us know how the rheumatologist works out!!
Liz D.
hello from me too! I am very new here, but have learned so much on the website. xx
Hi
Welcome from me too.I'm so pleased you did that search! All the best for your next appointment.
Kathyx
;D Thanks so much for such a warm welcome!! I feel so...understood!! I am having a bad morning (thank goodness cause I see the rheumy today) yesterday was an ok day, no red face (as I call it) I am asking her to put me back on the Plaquenil. I/she thought I had an eye reaction to it but that would have been impossible because I was only taking it for a week or two. I think it was the Sjogrens that was causing my eyes to hurt and we just didn't know it yet. I can't wait to go to the store and get some tears drops and some nasal spray!!! ;D I'm almost giddy about it! When you suffer so long, it's overjoy when you can find relief! You guys are great and so welcoming!! I can't thank you all enough!!! I will let you all know what happens today! I know I'm getting an ANA test for sure but that's all I know right now. When I see her she will more than likely (SHE'D BETTER) run the appropriate tests for Sjogrens. LOL! :o Thanks again everyone for all the love!! ;)
Dawn
Good luck today Dawn. I hope this rheumy is everything you need him/her to be.
Make sure those eye drops you get are "Preservative Free". There are lots of good ones on the shelf, you just have to find the one that works for you, so pick up a small bottle to start out with.
Hugs, Pooh
Hi Dawn and welcome to Sjogrens World from me too!
It's great that you did your own research and that your doctor listened to your concerns and ran the appropriate tests. We have to be our own advocates in this sometimes and that's exactly what you did! Good for you!
I hope that your appt. goes well today...let us know how it went for you when you get some time! Good luck!
Welcome to the group! I too am a relative Newbie as I was diagnosed March 2009. I figure I probably had this since about 1998. Got bounced from dr to dr and them driving me about crazy. My initial diagnosis "when a dr finally decided to label me" was indolent lymphoma and I am not sure if that is off the table or not yet.
I was diagnosed through my bloodwork (have A&B). The immunologist I started seeing thought to run the tests as he saw I had been having steady problems with teeth cavities and in the past had partroid gland swelling. It was an Aha moment as I tested very high for SJS. Thankfully I don't yet "hopefully never" have the bad symptoms that so many on this site have. I get sinus infections very easily, teeth decay, odd bloodwork, dry lower lip 99% of the time and occasionally fatigue and dry eyes. I am not yet on any medication for it.
Sooo glad you are finally diagnosed and don't have to put up with drs scratching their heads on a diagnosis or giving you the feeling that it is all you imagination. Good Luck!
Welcome to the group! You were lucky to have the knowledge and info to teach your doctor what you had. He will never admit it though. We all know doctors never admit their mistakes. You would be surprised how many nurses working in drs offices have never heard of Sjogrens. Even doctors themselves do not know much at times. I had a discussion with a consult ophthalmologist at a University Hospital and he insisted I had to have something IN ADDIDION to Sjogrens. I quietly explained that I had Primary Sjogrens and that is when you have just Sjogrens (at least they have no knowledge of another AI disease.) He didn't believe me and I did not want an argument out of it as I had a long car ride home. I just let it slide.
You will likely find more practical info on here than at the doctor's office. Lucy
Welcome Dawn!! I am fairly new two, just diagnosed 6 months ago, but this site will bring you comfort and encouragement.
Quote from: lovies10323 on June 23, 2009, 06:00:28 AM
;D Thanks so much for such a warm welcome!! I feel so...understood!! I am having a bad morning (thank goodness cause I see the rheumy today) yesterday was an ok day, no red face (as I call it) I am asking her to put me back on the Plaquenil. I/she thought I had an eye reaction to it but that would have been impossible because I was only taking it for a week or two. I think it was the Sjogrens that was causing my eyes to hurt and we just didn't know it yet. I can't wait to go to the store and get some tears drops and some nasal spray!!! ;D I'm almost giddy about it! When you suffer so long, it's overjoy when you can find relief! You guys are great and so welcoming!! I can't thank you all enough!!! I will let you all know what happens today! I know I'm getting an ANA test for sure but that's all I know right now. When I see her she will more than likely (SHE'D BETTER) run the appropriate tests for Sjogrens. LOL! :o Thanks again everyone for all the love!! ;)
Dawn
Don't get too excited as the plaquenil helps but you will still be sick. There is no cure for this disease. Good luck, Lesley
Welcome Dawn... you have received some good advice. Good luck with your next appt :)
I'm new to this disease too Dawn. Can't add much, but wanted to say welcome to you!!
Terri
HI , Dawn and welcome aboard :)
I'm fairly new too. I was dx by my opthmologist for the Sjogrens and the neurologist dx my Raynauds. I have my 1st appointment July 29th with the rheumy (I've had my appointment for 4 months :( ). So fair all of my blood work has been neg, but you will find a lot of people that have the disease and the blood work won't show it. I'm lucky to have an internal med dr. for my PCP that really listens and is helping put things together for me. He dx me with Fibromyaglia before the other doctors made theirs. Right now I'm on a lot medications and have been having a lot of flare ups- especially if I over do it and I don't get enough sleep. I am hoping that I'll be able to reduce the # of pills I take and feel a lot better.
Good luck today at the rheumy. Please let us know what they say.
Hugs,
Leslie
:) Hello everyone! I saw the rheumy and she gave me a definite diagnosis of Sjogrens...FINALLY, an answer!!! She put me on Plaquenil 200mg twice daily. I know it takes time for that to work, but its worth the wait! She also prescribed Evoxac 30 mg twice daily for 3-4 days then go to 3 x's a day. I haven't filled that script yet cause I just don't have the money for it right now. Has anyone else ever taken that? How did it work for you? I'm currently using "blink" eye drops and saline spray for my nose. I just got over a sinus infection and ear infection that has returned now, a week or so later! I am asking my Dr for a stronger antibiotic.
Hi lovies,
Evoxac is a great drug, but be prepared that with 3 to 4 doses a day, you may sweat very heavily. I am on 2 a day for that reason. But it will help with your dryness. The Plaquenil is the best drug, too. Glad the rheumy put you on it. Be patient, though. It takes a while.
I used to get sinus infections all the time!! Especially before my diagnosis. Now I use saline nasal rinse every day - in morning and at night, whether sick or not. I also use Flonase once a day. I am glad to say I have not had a sinus infection since.
Liz D.
Hi Liz
I'm seeing an oral consultant at the end of July, due to problems with my severly drive mouth. When it gets really bad, I can hardly talk, and my dentures hurt and cause sores as there's nothing to hold them in. My dentist has referred me and I'm hoping I get some Salagen or similar. The dentist has some knowledge of SJS, but by his own admitssion, he hasn't any experience of using the meds, and would prefer a consultant to oversee this.
The end of July seems a long way off, particularly as the referral was meant to be made in March but, due to an admit error, didn't go through until the end of May. I'm interested in what the consultant will make of my facial/gland pain, and whether he is as knowledgeable as the dentist suggests. Fingers crossed!
Kathyx
Hi lovies
I'm so glad you've got a definite diagnosis and a doctor who's prepared to start treatment right away. Glad you've joined the Sjoggie 'family' but also sad you've had to find us.
Pooh has great ideas about starting Plaquenil gradually. I followed her advice about starting with a low dose and building it up over a few weeks, as well as taking the tablets with food especially yogurt. I'm sure she'd be happy to give you details if you PMd her. It can take 3-6 months to feel much effect but it's worth the wait.
Do you have to pay for your medications? Are you in the USA or UK, or somewhere else? If you're in the UK you can get a pre-paid card so you only pay ?10 per month for unlimited prescriptions rather than pay ?7.20 each time.
I hope the sinus infection clears up soon. Post lots and let us know how you are doing.
Take care - Chickpea