HELP!!!!!
Posted , 6 users are following.
I don't know if I have Sjogren's or not but my ENT thinks so. I have been sick for years. Just had my 5th sinus surgery in May and thought that would do the trick as it usually helped for about 2 years. Since Dec I have had swelling on my face and neck by mt ears when I would get what I thought was a sinus infection and my Dr said it was fluid due to my sinuses. Well after my surgery the swelling keeps coming back. The first time, a week and a half post op, I had been ecposed to strep and got really swollen glands and went to my GP and he said ear infection and prescribed antibiotics. I have to take levequin or augmentin because I have been on so many antibiotics over the years nothing else helps. The swelling would go away and I would feel better for about a week and then it came back My GP said to go to my ENT to see about tubes in my ears. So I do that 2 weeks ago during a flare up of the swelling and ear pain. He says there is no infection, my ears look fine. He sends me for all kinds of blood tests and his nurse calls me and says me tests came back ok but he wants to send me for a saliva test to test for sjogrens. Several years ago I gad sligtly elevated ana and Ra test results but just had another sinus infection I have slightly dry mouth and eyes, have had really bad acid reflux, arthritus, some difficulty swallowing, but when I have this swelling my whole head feels like it is full of something My ears pop and I feel totally exhausted and just sick, can't work!! I an so frustrated and thinking I may have had this for years and never known it. I also get allergy shots. My thing is now I have to wait to get into this oral pathologist to get this test and when I have these flare ups I feel so awful I can't work and I live alone. I am a 54 year old very active woman. Also the antibiotics were working for this and now they aren't at all. I don't know what to do.
1 like, 27 replies
deidra40034 donna13544
Posted
Hi Donna...me again, quick question...have you seen a Endocrenologist by chance yet? They can run some blood work that others don't, that can show some markers now, that "they" say can show now if you have SS or not. It took a very long time for them to be certain I had it. As it turned out, they believe I have had it for years, long before they found it. I have had auto immune issues for years, and that is all they knew, then I changed doctors, and finally found some good ones that actually work together, and talk together, and they are working on getting my body functioning better now. This thing is so unpredictable!! But the Endo sure can help...also with your whole body...thyroid, hormones...everything! Might be a good idea, with as many issues as you have been dealing with. XO
donna13544 deidra40034
Posted
No I haven't. Do you have to have a referral? I now believe I've had it for years too. Everything I blamed on sinuses and allergies and just getting older...
donna13544
Posted
I'm so sorry you have so many issues
I tooo wish I just had dry mouth and eyes.. My joints hurt, I feel like I have the flu most days but after reading your things I shouldn't even complain. I hope you feel better soon.
deidra40034 donna13544
Posted
No, No...you have been put through the ringer my dear!! I just hate to see others go through this!! The joint thing can be part of it all, I just wish they would get to the bottom of it soon for you, so you don't have to continue to suffer like this!! I know too well how awful it is. The sooner you get a diagnosis...even if it is not SS, and get you on some sort of meds, the sooner you will feel better!! Once you know what you are dealing with, then you can move on, and get to fixing it, by reading up on it, and doing some of what others say works, like eating certain foods. I do eat right, but it has not worked for me. I hate to say it, but once it hits your organs, all the right foods in the world don't do the job, and you have to take the meds, and some time those meds can be very toxic. It depends on how far gone your Sjogren's is. I have to take the meds, or end up in the hospital...or worse!! My kidneys, adrenals, and liver are involved, once those start shutting down...we are in trouble! Do you see what I mean? All the right food int he world ain't gonna help it then! I don't even want to eat a lot of the time, so I try to force myself to eat to be healthy. I have issues with bloat too, as it affects the intestines...in MY case. It's nothing to mess with, that's for sure! So you want to get a hold of it before it gets this bad!! I don't want to see you, or anyone else, get like this!!