Hi everyone, my long path of symptoms has lead me here. I admit its a huge relief to read this forum and learn how everyone copes with their symptoms.
Edit,,,sorry this became me getting it all of my chest, its longwinded, my apologies!
My frustration with my gp is HUGE, recently I refused to see him,after he shrugged his shoulders at me, I asked to see another and realise I am not going mad!,The NEW gp told me he will not treat me for an infection or for thrush in my mouth as he said there is NO evidence i have those things, I have been treated for them for last 4 years. Thats alot of antibiotics, sometimes i definitely had an infection. I am prone to my glands swelling in my neck,throat area. I have asthma since childhood, I remember telling my doctor the only time I felt well was when I have been taking prednisolone for my wheezy chest.
My hips always hurt esp pre menstrually, i figured my bones hurt due to inhalers for asthma with steroid in them, plus steroids given when wheezy.
I had a blood test last week, came back normal, he tested for thyroid, diabetes, vit b 12 and blood count? I think. Had this done before to be told normal, then no further action. But this gp is requesting another blood test, had it this morning, to test for whatever they test for to show rhuematoid arthritis or sjogrens, I asked him if it would show up, he said it might, he said he didnt think i had it because it only affects those with arthritis. He did hand me a leaflet on fybromalgia. Also he requested xrays of hips and knees tomorrow.
I am pleased something is being done but still feel so awful.
Also (sorry this is long winded!)
I am due to see ENT consultant in April, I asked to be referred last year as lump in neck painful and my throat hurt when swallowing, I need water handy when i eat. I had camera down nose and throat he said all ok but i am tender and so is base of my skull, (occtipal?) I was sent to have scan on neck. Scan showed 2 masses, suspected salival stones, also they said TMJ was shown. They recommend another scan where they inject a dye into floor of mouth and rescan to show position and size of stones if there. This info has gone back to ent, that is my appt in April , he will advise further and arrange stone scan. I am taking him a list of my symptoms, i had FESS (sinus surgery) in dec 2011, to remove polyps from all my sinus tubes,,so i felt he was just checking it was all still ok, he said yes everything looks good since surgery. I told him i wasnt there for that, i asked him to please see me after scan as getting nowhere with gp and didnt want to go out system again ,,wait months again.
Also had scans on hips before, they said wear and tear, in 2008 scan on jaw, osteoarthritis or osteo something in jaw.. Never seen again about either. MRI scan 2008 on back showed degenerate L5 S1 disc
I am trying to piece it all together, my knees and hips are painful, recently my right foot big toe is painful.
My tongue is burning, every day esp at front and along sides, i cannot taste anything, apart from sweet salty and spicy, the tongue burning is horrible its been 8 weeks every day my doctors dont have any suggestions, have tried nystan,difflam,bonjela,cortysol, nothing helps.my tongue is white at back, i have lumps andbumps at back of mouth, the roof of my mouth aches as do my back teeth.
My ear pain is horrible, esp under the ears, feels like someone is sticking pins in them.
I am squirting saline up my nose as its so dry, my eyes sting at end of day.
The neck base of skull area is very painful and tender, it feels like someone hit me ! The top of my head is sore to touch, like u hit head on cupboard, but i havent. I get shooting pains in head, it goes numb too.
I am dizzy and feel sick alot and brain fog is a standing joke in our house!
I sleep well but not refreshed, only wake if in pain or dry mouth.
I also suffer from inflammation? Chostochondritis or something? In my chest, i get that pain alot, to touch it my knees buckle with the pain.
Cold hands and feet, sore fingers and thumbs.
There! If you read this far thats my symptoms! I sound like a right moaner when i read it! I am happy ! Married with 3 gorgeous children. Hubby is great, supportive and understanding.
I am hoping to finally get a diagnosis this year! Maybe a couple of things going on.
I hear you about frustration with GP. Mine said "I have never seen anyone with Sjogren's syndrome" and the rheumy he referred me to is nt much better. Hang in there.
Hey Tabitha and welcome,
No, you are not crazy. If you are ,we all are. LOL. Sorry you are here with us but this is a great forum with lots of wonderful people and information.
The process of figuring out what is wrong can be quite tedious sometimes, so hang in there. Listen to your body. You know your body better than anyone else. Journal your symptoms, how long they last, what makes them better or worse, ect.
The search bar up top is very useful also to help find info on this site. Being knowledgeable is important.
Sounds like you have had a tough time. Maybe your GP can just refer you to a rheumatologist?
Take care, let us know how it goes. CK
I hear what you are saying about your GP. My former one did not want to even hear about Sjogren's. She thought I had hormones troubles because and that what was causing my dryness. I lost about 50 pounds and still had even more dryness. Finally my finger swelled up and was quite sore and then she thought about gout. Luckily she did a RA factor test and I happened to mention my root cavities so she did an ANA and it came back 1 to 1280 and speckled. Then it seemed that she wanted to treat me but I told her I wanted to be sent to a Rheumy. I had a hard time finding one. The one she usually sent people to move out of state and another had closed their practice to new patients. But I love the one I ended up with. He's the greatess. You have to hang in there and fight your GP when you know they're wrong. Sometimes it even takes changing GPs. I finally had too.
Its a funny thing with many GPs. Mine told me last summer "you do not have an autoimmune disease." He acted like he was doing me a favor by reluctantly referring me to a rheumatologist.
I have a wonderful ENT doctor who believed (as well as witnessed) alot of my maladies and he agreed to do the lip biopsy which confirmed my Sjogren's. I am now in the process of working with my rheumatologist to find the best medication to treat my disease systemically.
Hang in there Tabitha......you need to find the proper doctor who believes you! I've had all of the nasal polyp surgeries etc. I finally resorted to having one of my sons take pictures of me when I was having one of my flares. My face turns bright red, my eyes get swollen and bloodshot and my nose becomes visibly swollen. I started briging these pictures to my doctors visits and the ENT doc registered autoimmune and he was correct.
I think some GPs want to keep treating you so they will not refer you. My former one seemed to like to try and treat everything instead of refer you to a specialist. She did the same thing when I started having bladder problems as well as heart problems. The only referral she made for me was to a Hematologist because my gamma globulin was elevated. I underwent a bone marrow biopsy because of that referral. She didn't even know to refer my to a kidney specialist when my potassium was up and then down. You do need them but I think some don't want to refer you to another doctor because they will lose your and your insurance money.
Welcome Tabitha, sorry you had to find us tho' You have experienced what quite a lot if us did when this crap first hit us !
No one, especially the Doctors do not get it! But now you seem to be getting somewhere,
you will learn many things about SS here, no cures, but good tips and advice, and much genuine sympathy.
You will also read many stories similar to yours, also some very sad ones.
Please keep us informed of your progress and your diagnosis .and much good luck, Dolly x
My problems was with a bunch of "so called specialists". HA! >:(
My gp didn't like my blood work or #s and sent me to one specialist, then another, etc. I went for 6 years looking for a diagnosis. My gp didn't give up on me and was acually upset because he thought a "specialist" was special and could diagnose me. He and I BOTH have a new opinion on "specialists". I heard everything from "probably something you got from your cat" (I didn't have a cat when I first went around) to "I think it is cancer but durn you are not sick enough" excuuuuuse me! After 6 years I finally had an immunologist at a teaching hospital diagnose me positively for Sjogrens. My ANA, SS-A and SS-B was sooo high there was no doubt he said. Wonder why the others couldn't find it? ::)
I learned that a lot of doctors doctor out of a textbook. If you fit the textbook symptoms, they are a whiz at treating you. But give em something that doesn't fit the textbooks and they are completely at sea.
Unfortunately, Sjogrens likes to go along with other autoimmune stuff. Most of us have something with our Sjogrens - whether it is Fibro, Hashimoto's, arthritis, Reynaurds, or whatever. It does sound like you have something else going too.
Good luck with the doctors treating you and getting a diagnosis!!! and WELCOME!
The teaching/university hospitals seem to be a good thing from my experience and from others on here. Not always, but they mostly cut to the bottom line asap. Lucy
:) wow thankyou all so much! I am in the uk, i think my old gp really didnt believe i felt ill, he was same with constant sinus infections, it took 2 years and me asking and asking to see ent, they did mri, then within 5 weeks had urgent surgery to remove the polyps, 2.5hrs of surgery, after gp said 'no wonder u kept coming to see me,,sigh! My reply, did u think i just wanted to visit you ? Ha!
I have xrays today hips an knees, my knees are painful today but i worked yesterday.
I realise like most i have just tried to get on with it, work, kids, life, i fully intend to carry on doing that but accepting i may not be on full throttle all the time.
I havent taken my usual cocktail of vitamins or anti inflams (brufen) for last couple weeks, i wanted to make sure they dont interfere with bloods and xrays, is that mad? I have no idea whether they do! Part of me wants the doctors to see me at my worst.
My usually healthy diet of clean eating and low carb has gone for now, my mouth is too sore, i want salty an sweet stuff, my head spins with it all and just eat what i fancy. I plan to get tests out of way, then go back to clean eating and vitamins, i shall need to find out if vits i take are ok and what else to take.
I take huge comfort and support that you understand and your journeys to diagnosis are just as frustrating!
I saw my beloved PCP yesterday for the last time for now, as my health insurance is running out at the end of this month. She had a student nurse with her. Before the student came in, my PCP said to me "I told her seeing you would be a good experience as yours is a very difficult case." Of course, she meant nothing bad in saying that....she has been my advocate over the years when there was no one in sight to believe me. But it still hit a nerve when she said it. So it goes!
I left there thinking what it must be like from the student nurse's perspective...in interviewing and sitting in on an interview with someone who is extremely fatigued/tired/worn out with myriad symptoms. Hoping this "difficult case" was a good learning experience for her.
Also saw my dentist yesterday, his office is my 2nd home with all the Sjogren's induced dental problems. I feel like his staff is family, honestly :) as I'm there so often and so many of those visits I have been pretty "out of it" or just plain sick. There have been times I've educated the dental staff about details of Sjogren's that surprised them. So let's hope we are good educators as well as patients.
The worst for me, hands down, was the work environment....there was no understanding there ever. It was a matter of "hunkering down" and dodging bullets...while co workers would say "What on earth is wrong with you today!" Or "What is it now? You've sure been out a lot lately." I always had fantasies which got me through: a box full of water balloons that I'd throw at someone as they left my office....doing spastic-type dancing down the hallways (to confirm their diagnosis that I was crazy), and others. Sometimes these fantasies got me through the day!
Tuesday I was sitting at rheumy office wishing I'd kept a journal of time spent doing just that....waiting to see doctors. The average time spent at this particular rheumy's office is THREE hours. Waiting like that has got to affect us, as we sit day after day...and so often leave with nothing much to "go on".
So here we are, at Sjogren's World, and lucky to have each other, and so good to learn from one another. Hoping a good weekend is in store for all.... Hang In There....it is what we do best! (((((Hugs)))))