Need help from everyone! my throat is almost closed doctor said!

Thanks for replying. I've seen 2 rheumatologists but they were not interested in my throat issues as they knew I'm seeing an ENT. They just said that I don't have any evidence, I only have elevated blood markers for Sjogren's Syndrome. One of the NETs I have seen thought it could LPR. But as of today My throat is so swollen that the walk-in doctor, whom I trust a lot, said my throat is almost closed, and it's true because swallow my saliva with difficulty. Anyways, I will push to see a Gastroenterologist too. Though my doctor said that it's a very strange was of swelling that he has never seen. 

Sorry you are feeling like this. LPR I believe is gastric so I would definitely get in to see a Gastrologist. They usually treat with PPIs. I couldn't even tolerate the pills so I was given the syrup for my reflux. Thank God it helped me so much. I didn't have LPR but had alot of swellling still don't know what it was. I assume you are losing weight. If you are, keep alot of nutritional drinks on hand. I lived off of those as well as squash and zucchini. I would steam them and they would go down smoothly. Also ginger and tumeric teas for inflammation helped my throat. The first test doctor ran on me was an endoscopy, then a swallow barium test, lastly a manometry. If nothing comes up, I would seek the help of a neurologist. Hope something helps. I will keep you in my prayers.

Thank you soo much for your kind words and valuable advice. God bless you.

hi Christine , 1 of the signs of SS are swollen parathyroid glands as told me by a rheumatologist recently...before I was diagnosed I was told by an ENT man that I had a lymph gland infection ,however 3 weeks of antibiotics did nothing for it. 2 months later rheum diagnosed me with SS, and with your swollen glands and elevated blood markers I would have thought the rheum would have investigated further. Find another rheum??

HI, Thanks for replying. How are your lymph nodes now? How did you get rid of the infection, that scares me, because the antibiotics don't seem to help me either. They pop up in my throat like bubbles. I have also little to no saliva. But the thing is that my parotid glands are not swollen at all. I'll see a rehumatologist again but meanwhile I'm more worried about the infection as I have on and off low grade fever. 

Hi.. my swollen glands lasted about 5 weeks and subsided by themselves. ..in hindsight I think it was probably a flare of SS though last week the rheum told me "There is no such thing as flare in SS..its an autoimmune disease and u have to deal with it" I was politely asking when I could stop taking the plaquenile and her answer seemed to suggest NEVER. When I was 1st diagnosed in 2015 I stopped plaq after 3 months and  I was fine and then in Dec 2016 my swollen joints and muscle pains came back with a vengeance and I have been  on plaq since june 2017. So now am really scared of stopping treatment...as I still suffer stiff and painful joints now and again in spite being on plaq.

My dry mouth never came back and my eyes still hurt now and again (have punctal plugs in and also started lubricant as macular has changes ...age related I have been told).

I too had fever with chills when I had swollen lymph glands...but all subsided in the end.

  

?Insist on further testing with your rheum. I have been on 200 mg X 2 daily of plaq and my bloods still came back Strong Positive for primary SS..(only SSA antibodies found). Keep persisting with your rheum until u get answers. 

Thanks for replying. So I need to give the glands more time to subside. I’m finishing the antibiotics in 3 days. I have a gland just under the ear, it between the jaw bone and neck. I don’t knwo if this a swollen lymph node or salivaty gland? It’s hard rock about 1 cm

hi , has anyone suggested fine needle aspiration (FNR)?  That way you know for sure what it is . I had 2 'infected' glands 1 was 8mm and other was 5mm. And if they hadn't subsided within 6 weeks I was supposed to go back for FNR. Mine did... 

has rheum suggested a lip biopsy to test for SS (I never had it done) though I don't know if it always comes back positive for SS

Mine were 1.7*0.5*2.1cm then they subsided to 1.8*0.6*1 cm I don't know what they mean? Never suggested to do FNA, they just brushed me off. The lip biopsy was suggested by the rheumatologist but she said it will give you nothing to me, it's almost always positive. Besides she said the wound heals slowly.

I have SS and same symptoms SD you. I do not have lpr or reflux. Meds haven't helped me at all, they keep giving me Prilosec but it just helps with inflammation a little. My case is hard because I'm seronegative and never have elevated inflammatory markers but it's definitely sjogrens doing this. I have a constant bubble in my throat and it's pretty bad flare. I also have celiac but gluten , soy , wheat and dairy free hasn't helped my SS at all just me celiac. You are not alone . My flare has been three weeks and it's not calming down.

Hi Paminela. Thank you for your reply. I have lymphoid tissues swollen and hypertrophied. They say they never saw such a thing nor know what it is. I have seen 3 ENTs with no result. My NET too said I might have LPR. But it looks like I have some sort of infection as the tissues in my throat keep swelling and are filled with yellow substance, don't know what it is. I also have armpit pain. I'm seeing my ENT in 3 weeks. 

 

I was tested for a year for SS. Kept coming back negative. Not a single rheumatologist bothered to mention seronegative testing in 30 percent of patients. My dentist finally said "your mouth is too dry" we need to do a saliva DNA test. And that's how mine was diagnosed. Positive dna for SS

Hi, This has been happening to me recently but I thought that it must be something I ate. My neck feels swollen inside every few days but fine on the outside. It has felt at times like it was closing off. My eyes are severely dry and the eye dr. I just saw says it looks like Sjogren's. My sister had this years ago, I'm waiting on lab results from the rheumatologist but in the meantime the dry eyes, joint pain and fatigue among other symptoms are worsening fast. Any feedback would be greatly appreciated!