My name is Kellie. I am a 38 year old mother to 4 young children, and I so love my life. I have been on a difficult journey though, that has led me here (ok, 5 months is nothing compared to most, but it was hard enough). I have had many, many tests done and thus far they point to Sjogrens. I am now only waiting on the results of the lip biopsy done last Wednesday, so to confirm one way or the other. My bloodwork showed that I had an 80% chance of having this. My eye exam showed good tear production, but very poor tear quality. The doc's keep telling me that my mouth does not look dry, but I have had this stinging feeling on my tongue for 3 months now, and it goes all the way down my throat and sometimes feels like it is in my lungs. I asked the ent if the same thing could be going on in my mouth such as my eyes (enough production, just poor quality). He said yes, but when I asked him how to test for it, he said that he did not know as he had never done it.
I have never before had any serious health complications, and feel confident that I will get the help I need whatever the outcome, but these last few days of waiting have been hard. I keep hearing that the results will not change anything, but I really hope it does. The doctors will not treat any of my symptoms until they have test results, and this chronic pain in mouth/throat is getting to me. Oddly enough, the last few days my neck joints have not been aching at all (first time in over a year!).
I have yet to meet anyone who has heard of sj (outside of the medical field), and I am really tired of people saying, "At least it is not something serious". So here I am :). I know you all understand what it is like to be in limbo. I am so thankful that it is not worse, but I still need to learn how to manage myself if I have this.
Thank you for giving me a safe place to vent.
Kellie
Welcome Kellie - my thoughts are with you as you wait for diagnosis. It's so hard and feels like everything depends on one test result, but really your doctors should be ready to treat your symptoms anyway. Bear this in mind if they say the results don't back up their expectations.
I do know exactly how those 'at least it's nothing serious' comments make you feel. I was diagnosed in March (without lip biopsy) and started on treatment straight away. Although I was expecting to hear I had Sjogrens, it was still a huge thing to take in and coming home/going to work/sharing with friends was a hard time. To be fair, nobody really does know about it. Sharing my worries and concerns on the forum here has definitely kept me sane! There is almost always someone around and lots of advice and encouragement too.
Thinking of you as you wait - be sure to post and let us know how you get on. Where do you live Kellie? xx Ailsa
Welcome Kelli this is a great place to be. My 4 year old little girl Jenna has SJS and if I didnt find this site I dont know where id be. They really care about you here it is like one big family. My thoughts and prayers are with you as you wait for your results. Hugs and Kisses Jonnell and Jenna
Hello ans welcome, Kellie.
I hope your doctor meant he won't treat symptoms until the tests are complete because he didn't want the treatment to mask or alter any results, not that he wouldn't treat without positive results...no matter what causes these symptoms, they need to be relieved!
Burning tongue syndrome is not the same as dry mouth, and can cause stinging. This could be treated in an entirely different way. If you have a good, understanding dentist, maybe he could help with that, even if it isn't due to SjS (not saying it isn't). You may have already read about many of the members here having yeast infections of the mouth, throat and proceeding all the way to the lungs or stomach...this could be a possible cause of your stinging even if you do produce some saliva.
You'll find plenty of information here about managing yourself , if you do have SjS. My best suggestion is, listen to your body!
If you're tired, rest; achy, take something or use heat, cold or massage; use OTC eye drops and mouth moisturizer when you feel dry--that feeling won't go away if you ignore it; if you feel certain foods, activities or exposures are aggravating your condition, avoid them; if you feel some supplement, vitamin, diet or regime helps, go with it (after letting your doctor know, of course).
SjS, it's symptoms and responses to treatment are all very individualized. For that reason, it's often helpful to keep a symptom diary...record how you're feeling, what you ate, what activities you participated in, what treatments you used...and watch for patterns. This is also helpful when you get to the doctor and he asks "any problems", you can tell him "every time I eat (whatever) I feel better/worse" or "my symptoms seem better/worse when I do (whatever)".
Please let us know what the lip biopsy shows, and what your doctor plans to do about it.
Hi Kellie :)
Welcome to Sjogren's world.
I think that waiting around for test results is about the worst time. It's like time goes 'on hold'. Once you know what your dealing with - you get on and do it!
SjS is a very individual disease and no two Sjoggies seem to present in exactly the same way. It's interminable - but not terminal. There is definitely life after diagnoses!
I hope you get the resukts you need soon and the symptoms you are suffering should be treated regardless of the results!!
Take care - Scottie :)
I'm sorry this has happened to you, Kellie!
I hope they find the answers soon and help you to feel better.
By the way, which of your test results supported Sjogren's? It is a good idea to get copies of all lab work because you may need to see other doctors (ENT about mouth/throat pain).
Welcome to the family,
Janna
Oh thank you! :) What comfort.
To answer some questions:
I live in Alaska, and have get my medical needs addressed at a military hospital. If I have Sjogren's they will send me to Seattle to be treated. If not, then my symptoms will be treated individually here. I don't really understand the wait as I have been told that treatment would be the same anyway. The burning started when I was put on 5 different antibiotics, and fungal (lamisil) for skin wounds on my face and scalp that would not heal. Finally, a biopsy was done to that showed no fungus, and no bacteria. I thought that the burning was from that, but now that my eyes are doing what they are doing I am wondering about my mouth. I have mentioned this to several docs, including the ent who did my biopsy, yet no swab has been done. I have been eating a lot of organic yogurt in hopes that that would help, but it only gives me the relief while it is going down. I have been using the over the counter products too, and was told to take motrin. Biotene helps temporarily. Oh, my dentist has seen me a lot lately as I have had very rapid tooth decay going since the burning started.
I don't have the lab print out in front of me, but I know that I have pos ana, ssa, and whatever it is that indicates joint inflammation. It does not happen a lot, but I get numb/tingles in my pinky toes. Another weird thing is that the tissue under my toenails seems to be soft, I could pull some of my nails back and away from the skin if I wanted (just the ones that have been hurt). My migraines have reduced by 80%.
If I do have SS, being a squeaky wheel has led to an early diagnosis. I won't even get started on the mistreatment I went through at my hospital (is there a soul here that could not write book?) before I met a provider (a wonderful PA) who would PRACTICE MEDICINE on me! :P I was beginning to think that I was crazy, and self inflicting like most did.
My husband just got back from Iraq (I love our military, just not the way they are being used), and we are moving to Sacramento Ca. this summer. My kids are ages 4,6,8,10. It is a semi stressful time for me, and btw, I am related to anxiety!! I am trying though to relax, and keep my sense of humor.
Is there a facebook group for SS?
I've not seen a facebook Sjogren's group.
Oops, that's wrong. I just looked and they have a bunch of them!
Hi KJ,
If you have positive ana and SS-a, then is that enough for a diagnosis of Sjogren's? I thought it was.
Calli
I think that because my eyes were not dry when my results first came back, and at the time my mouth was not so bad, that they wanted to see both ssa, and ssb. I think each provider is different though. I really had to push hard with my family practice provider (who did not think that I had anything) to get referred to internal medicine. The internal medicine Dr. walked into the room and said, "Well it looks like you have Sjogrens". He ordered the eye exam, and biopsy. If they indicate SJS then I am to be sent to Seattle to see a rheumie.
I called the ENT doc today and he placed an order for the medicine that increases saliva flow. I am really looking forward to that relief. He also said that I did not have signs of a fungal infection in my mouth, so I am pretty sure what my outcome will be.
Kellie, As the others can confirm, symptoms vary from person to person. I did not have the traditional dry mouth and my eyes did not seem dry when I started this process. I had never heard of Sjogren's. You are having to deal with medical issues while trying to raise four small children. Please make sure that you take care of yourself and just take it one day at a time. Good luck to you. Roxanne
Kellie, Welcome to our site. Great place to be if you are sick!!! You might want to ask if possible to have yeast in your esophagus and ask if they can scope your esophagus and stomach. This is not a hard thing to do and they do it under light anesthesia. They are then able to visulize the tissues and also culture to check for bacterial or yeast infections.
If you were on a lot of antibiotics yeast is a very likely culprit. People with sjogrens are at higher risk of yeast because the saliva they do make is not made up of the normal products and the overgrowth of yeast is more common.
It sounds good that you will be moving to CA this summer. You will have more access to medical care. I would think that they have rheumatologists in the service---along with neurologists, etc. Tell them to google sjogrens. 8)
Hope that you get a positive result with blood work cause it makes it easier to get treatment most of the time. So many of the docs don't understand that you can be seronegative and be really ill. Good luck. Irish
Thank you Irish,
If my lip biopsy is possitive, then they will call it SJS. I wonder if I need to check for yeast if the new medicine, to increase my saliva, works. I guess I will bring all this up next week during my visit. As for a rheumatologist, the ones here are not taking new patients and that is why they would send me down to Seattle. Kellie
Welcome aboard, Kellie! I've been gone a bit as I've been overwhelmed with work, doctor appts, preparing for daughter's senior prom and graduation. I live just east of Sacramento, but work downtown. If you have any questions about our beautiful city, please ask as I'm a native!
Hi KJ,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics and oodles of information too.
I'm with the others, waiting for the lip biopsy to call it SJS or not? Dang, the last I heard was that it would be called SJS as long as the blood work was mostly positive; hummm, guess a few doctors haven't gotten the word, eh?
I can't speak of a burning tongue/mouth, but I can about the eyes...been "round the globe" with my puppies. You mentioned that you have enough tears, but lousy tear quality, how so?
I too have lots of tears, but bad quality due to lack of oil, all of the tear glands (oil glands) are blocked - so my tears evaporate way to fast. When I first started to have problems, the tear evaporation rate was 2/3 seconds, normal is around 12 (very dry/painful). Has your eye doctor every put you on any drugs/drops to help with your eyes?
Again, welcome and I hope to chat with you soon!
Take care -
Patze
Welcome Kellie, you have received much info here already, but just want to wish you well, and hope you get to the root problem of all your trouble soon..
Your living in Alaska ?, brrr, that makes me shiver ! I am complaining about the cold weather here in the UK, and it's supposed to be Spring!
Good Luck, and please let us know how you get on next week.. Dolly
My appt. with internal medicine was interesting yesterday. This doc said that she thinks I have a vitamin D deficiency, and ordered the test. She also said that it looks like I have thrush, and since taking the medicine I feel much better. So, after 6 months of suffering and appointments, test after test, it may be that I just need one simple little pill! I do live in AK, and I have been asking every medical provider for months now if I could have thrush, even the ent. All said no, that my tongue looked fine.
I don't know if this would explain my ANA, and SSB (I was wrong about the SSA). I produce enough tears, but my tears break up at 3 seconds (that is where the poor quality comes in), but that could be a result of vit D too.
If this turns out to be the case, I would be able to say that I know one thing that could cure all! I am skeptical and hopefull.
Thanks for all the support, I will post again when I find out.
Blessings to all.
Hi Kellie
Sceptical and hopeful seems a good place to be! Vit D deficiency and thrush could explain some of the symptoms but, as you say, the blood test results still have to be explained. It's good to hear that you're feeling a bit better.
Keep posting and tel us how you are doing.
Take care - Chickpea
Kellie, Good to hear that you are responding the the pills for the thrush. I also have a vit D deficiency. What did they say to take for that. I hear I have this or that but am not always told what to do for it. Roxanne
Hi Roxanne,
Supplements is what I was told, if my test shows a deficiency. I was at Costco today and found all sorts of products claiming to boost D3. I had no idea that it was so popular. I bought the regular pills, and a juice to try. Did you have a blood test to discover your deficiency? If so, how long did it take to get the results? Did your doctor seem to think that it was the root of all evil, or just an aggravator? Kellie
Kellie, D deficiency from a blood test and it took just a few days but I had to call and find results. Doc did not say that much about it because this was not the Rheumy that diagnosed the Sjorgren's but the regular Doc. On my own I started to take a Calcium supplement with vitamin D. Have not had blood work since I started with the calcium. Through a bone density scan I was also diagnosed with Osteopenia which is pre-osteoporosis. My husband keeps trying to get me to go to a doc he knows who is a more natural based healer who does believe that Vitamin D deficiency is most likely the root of many health problems. Right now I am doctored out. Just trying to deal the best I can with ice, alieve and rest. Roxanne
I know what you mean by "doctored out". My vitamin D levels were fine, and now I have to wait another 10 days to be seen in interal medicine again. I am getting to the point where I do not want medical help at all, because of all the stress just to get treated. I am not sure why it is okay for them to turn me into a chicken with a chronic chopped off head! :P
Well, I did see my ENT yesterday, and he said that he and his partner believe that I do have ss (and that was before I knew that my vitamin d level was good).
So now what? More waiting, and waiting. I am just going to forget what is going on the best I can, and enjoy the beautiful weather here in Anchorage, my family, and anything else that I can think of - now that's what I call practicing medicine! Kellie
Hi Kellie
That sounds like a really good attitude to life in 'limboland'. It's so easy to get caught up in 'what ifs' and lost in all the appointments with doctors and specialists. Family, friends and beautiful countryside are just what you need right now.
It's good to hear that your ENT is willing to diagnose you anyway, and is taking you seriously.
Hope you have a restful weekend.
Take care - Chickpea