Hi all,
I'm new to this and grateful already.
I'm currently struggling to get diagnosed and wondered if others have had this problem. My symptoms are dry burning mouth, sore swollen glands along jaw and near ears. my left sublingual gland has popped right up.chest and back pains...like i'm bruised all over. GERD fatigue. My eyes aren't so bad but i have felt odd wet sensations in my lashes(?)...feel awful today. my blood work and saliva test is all normal except for Rheumatoid factor and immune activation. Been to a cardio guy, gastro guy, rheumy, oral surgeon (who noticed the dry mouth and the popped up gland and thought Sjogren's) Next I go to an ENT for the lip biopsy. I must say after this gauntlet I am very discouraged and feeling worse than ever...fuzzy head and achey body today and a couple new weird cankery things on the tongue. Feel like i'm goin crazy to be honest.
OMG, Tony, you sound just like someone with Sjogren's! :o
Has your rheumy placed you on any kind of medication?
Hey, thanks for that. No, the rheumy kicked the can down the road to ENT guy. No meds nothing. I drink water. use biotene stuff. chew gum and take ibuprofen. None of it is very effective. Am a little anxious that this thing WON'T get diagnosed. Not a new story i gather.
I'm also on nexium for Gerd and Domperidone for duodenitis and something for thrush... none of which are every effective as they treat a peripheral symptom of the real problem I believe. My G.P. thought I had thrush because of white patches they kept appearing then vanishing in my mouth. I told him it was due to dryness and had been happening for months and he squinted at me like i was nuts. I showed him the cracks on my tongue and he said he was not convinced. It's strange how some docs get tunnel vision when presented with obvious symptoms that don't support what they're saying.
Welcome Tony! Stand up to your doctor and then seriously start looking for a new one. I know, easier said than done but your health is paramount. I've been there, done that. It's not easy but we have to keep fighting for good health care. You're among good people here.
Welcome Tony. There are other men on the forum. Some of us have posted what we are taking in our signatures. I have had to go with alternative therapies.
Hi Tony,
Let me also welcome you to the SJS World and family! Please do look around as there are scads of topics and oodles of information that you just might find interesting - I know I do! :)
I know what you mean about feeling awful, there are days! Anyways, I'm with A66eyroad, what meds have any of your doctors prescribed to help?
I get canker sores all the time now a days, and mostly they don't bother me much (other than the pain), but I'm now getting blisters and more sore throats (wonder if its related to the severe GERD/eosinophilic esophagitis? Ugh, reminds me I need to see the gastro again).
Will your doctor prescribe meds to treat your symptoms until you can get a diagnosis?
Good luck and hang in theres, okay? Sometimes it takes a long time to get an answer.
Patze
Thanks all..encouraging to not be alone in this...honestly, it's getting to the point where i'm just reluctant to open my mouth about this to anyone anymore...this started almost 2 years ago (though now i see symptoms i ignored for longer'n that) but only started becoming alarming last spring...i have yet to have any dr say more than they `suspect it's sjogren's' and without it meeting criteria for a diagnosis no one is willing to treat it. The symptoms have gone from occasionally dry mouth and gerd to something debilitating. Something awful is going on in my chest and back...but xrays and endoscopy shows nothing. glands in my face and neck are lit up and sore....and i can't eat easilly now cause my mouth is all cracked and on fire. I am hoping to maybe get somewhere with the ENT in the new year but right now that seems a long way off. The heat on in the house seems to have made bad worse. anyways, that's me venting cause i've been doubting my own voice lately. so thanks.
Welcome Tony, You are never alone here. We can relate to all these things. Some doctors do brush us off or I think if they don't know much or anything about sjogren's they want to pass us on to someone else.
susanep :)
Hi Tony,
Welcome! ;)
I'm sorry to hear all you're going through, but you've come to the right place. There is loads of information here, and lots of friendly people who will support and encourage you. We *get it* because we're either going through much of the same as you, or we've been there.
Unfortunately, it's a common story for one to go to this doctor and that, not be taken seriously or diagnosed and start feeling like we just might be a little crazy. This "criteria" thing that some doctors have makes no sense. You (and all of us) should be treated for symptoms appropriately, whether there's a diagnosis or not.
I hope you have some progress with the ENT you'll be seeing. You deserve to be listened to, taken seriously and treated. You may need some patience and real determination. I know it can be hard to fight for yourself when you feel so rotten.
In regard to the heat in your home, many of us have humidifiers that help. Just some steam in a hot shower can help at bit; anything to get more moisture.
You are not alone here. We understand, and you can vent at any time. Please ask anything, and know that we care.
Melinda
Hi Tony,
I've always had a problem with my stomach (starting with ulcers at a young age), and then diagnosed with IBS more than twenty years ago. Even with meds and diet to try to "control" the IBS, the symptoms slowly continued to worsen and the doctors kept telling me that theres nothing else they can do, blamed everything else on it, and/or just threw their hands up and ignored it. Once the current gastro started to really dig for answers, he found some.
I also understand things that were ignored back in the day now actually have a name and a treatment option, but the journey to finally get diagnosed was miserable. Even though doctors are very smart, they can't know everything; then throw in the variables, and it can drive a doctor crazy.
Like the others have mentioned, its often a long road and sometimes there are a lot of twists and turns in the story as everyones body is so different.
I wish you luck and I hope that you find a doctor that will be able to put the puzzle together soon.
Take care of yourself -
Patze
Thanks all. Nice to hear this encouragement. Chest pain and esophageal discomfort is always frightening. The pain feels outside the lungs which makes me think it's costochondritis. Feels like I'm made out of Captain Crunch these days. Any way, gotta get out of my head a bit I think. Suck on a bon bon and watch River Monsters with the kids.
flying to U.K. tomorrow. gonna be a challenge. 2 small kids and dry dry plane. tongue is a red inflamed balloon tonight.too sore to even chew gum. Are cracked rubber inner cheeks sjogren's? 'course it is. i am committed now to sitting my g.p. down when i get back and saying, look, dude, regardless of inconclusive, we gotta start treating this soon or i'm gonna flippin' crack. chest so bad today felt like someone was stabbing my torso all day. had a new weird one today though. put a piece of gum in my mouth and it stung as if i had a mouthful of bees then all of a sudden saliva practically sprayed out of my mouth. totally weird. my significant dryness of the mouth occurs at night, and can pull saliva in during the day...but this gushed for about 30 seconds, then returned to pasty, plunkey mouth. I really appreciate the info i get here.
Tony, If you can get ahold of a mask to wear---like a surgical mask. You may not want to wear it really right, but when you wear one you will find that the air that you exhale contains moisture that stays in the mask and helps to keep your airway more moist.
Also, wearing a mask on a flight isn't all bad either as the germs tend to congregate in the close environment. I have also found that having a very clean, damp washcloth to hold over the nose and mouth (very lighty-not really tight) helps to cool and moisten the airway. I got through many years of lung misery when I had not clue that I was even sick.
Welcome to this site. Lots of information and support here. I would encourage you to see a lung specialist when you get time to have a lung assessment done. This way you will get inhalers, if needed, plus you will at least get a baseline pulmonary function test done. Sjogrens affects the lungs---a lot. Good luck. Irish ;D
Tony,
Good luck with the trip; hope it's not too rough on you.
I applaud you for your determination the the GP when you return. That's pretty much what I did when I found a new GP who finally treated and diagnosed me.
I told him I had a GP who was at a loss as to what was wrong, a rheumy who didn't listen, all these awful symptoms and I needed help!
Someone else probably can explain better, but with the saliva shooting; sometimes we get a "clog" of sorts in those glands. The acid or whatever in the gum may have helped clear it, so the saliva finally flowed a bit.
Take care and keep us posted.
Melinda
Have a great trip and let us know how things are going or went.
Tony, when you go back to your g.p. maybe you can give him this info on Sjogren's: http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms (http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms)
Also, when I reread your post, I saw that you mentioned that your oral surgeon thought about Sjogren's after seeing you. You might give him a call and ask if he knows any doctors who see Sjogren's patients. Or perhaps, if he's got any other patients with Sjogren's, he could check their chart to see who their doctor is.
Good luck flying today!