I'm new to this site but I signed up because I wanted to ask the Sjögren's sufferers out there what they think about my symptoms. I fear I have the autoimmune disease and really just want to reach out to someone who may have gone through the same thing.
So here is my story:
Boxing day 2017 I got ill, I thought I had flu or something, but it didn't get better. I didn't go to the doctors until March where I was diagnosed (after blood tests) with glandular fever / infectious mononucleosis / ebv virus.
I was told there was a possibility of me developing m.e/chronic fatigue syndrome I'm guessing because I kept pushing on in those early days not realising how sick i was.
In May I tested negative for glandular fever, yet still had all the symptoms. I was told if I was no better in 3 months to come back to the doctors.
August 2018 and I went back to the doctors. My doctor wanted to illiminate all other possible causes of my symptoms before doing a chronic fatigue referral which was fine. She put me on a high dose of antibiotics, gave me a special mouthwash and I also had to get some ear drops because my ears were loaded with wax! She said to see her in 2 weeks if none of it worked. As you can probably guess, it didn't.
So I went back last week, and she has decided to refer me to see an ear nose and throat specialist. This is fine because most of my symptoms involved these areas. Since I left the doctors, I found out about Sjögren's and I'm wondering can you get this disease from having glandular fever? Has anyone else developed it this way?
I went to the dentist during may/June some time and she shocked me by saying my teeth had gotten worse. I have ALWAYS looked after my teeth extremely well since I was a child.
I thought maybe I'd become a bit slack with my oral hygiene so I invested in an electric toothbrush, started flossing twice a day and also more recently got this prescribed mouthwash plus some charcoal for the teeth.
But my teeth have been getting even worse despite my best efforts. They are going brown on the gum line and it's very scary, especially when you feel like your teeth should be glistening! I don't drink, smoke and I only have 1 coffee a day. This symptom is what lead me to find out about Sjögren's, and here's a list of my other symptoms:
chronic sore throat (the worst symptom, normally sore throat is worse on one side and sometime when I've exerted myself too much I get white marks on the back of my throat but apparently they're not tonsillitis marks says my doc)
sore throat also hurts when I swallow and talking or singing just makes it worse and worse.
proper furry tongue which I constantly have to brush, it normally goes like a greeny black colour.
sores in the mouth
dry mouth, my tongue feels parched even when I am swishing water around my mouth it just won't absorb anything
The (what looks like) tooth decay.
constantly applying balm to my dry lips
scabs in my nose (from dryness?)
extreme fatigue probably the other worst symptom, effects my every day life and is quite frankly miserable.
joint/muscle aches and pains. normally worsens with activity/fatigue.
my ears have been sore but I think that's due to wax.
that's all I can think of right now but as you can see all my symptoms except the fatigue and aches/pains are all ear nose and throat related.
what are your thoughts?? I'm sorry for the ridiculously long post but I'm really worried especially about my teeth. do you think an ent will know what's wrong with me? And if you have Sjögren's, does this sound like something you've been through?
Any response is hugely appreciated, if you read all of this I'm truly grateful.