Sjogren's Syndrome?

Hi - I have an incredible sore throat and dry cough and sometimes pain in my chest. My voice is hoarse and the hoarseness and pain in my throat increase when I speak more than a minimal amount. I sometimes have pain and burning in my upper chest. My right ear is consistently in a large amount of pain what usually increases after eating, my left ear hurts now and then. I had a neck CT and all that showed with several swollen lymph nodes and a thyroid nodule. The ENT says that he can see signs of reflux when he did the scope and believe strongly that I have a TMJ disorder. as recommended I followed up with a dentist that says I have absolutely no signs or indication that there is anything wrong with my TMJ. I'm having a CT tomorrow. All of my blood work(ANA etc) is negative for auto-immune. Is it still possible that I could have Sjourens based on my symptoms and will the CT confirm or deny it?

Can anyone tell me how much is taken for a lip biopsy which is quite a thought if your lips are already a bit cracked and dry?

I also have dry eye, using over the counter drops, a couple time's a day. Some relief. Teeth and gums hurt as day goes on. ugh! I do use Biotene before bed, helps some. Dry lips I use bacitracin, sometimes vaseline. so, so.

I have the blood tests also, came back a big 0, but I have all the symptons of Sjogen's synodrome. I also have a thyroid problem that is under control. My rheumatologist has tried all kinds of meds, which I have allergies to. I am now using aquoral spray, to be sprayed in my mouth 4 x a day. Today is my second day, makes my mouth with salivia again, I was sent the name of another rhematologist from GP, because I'm just so disgused, I don't know what I will do.

Grandma2213, I am unusual in that I do not have swollen or twisted joints, as people would expect with RA. Looking at me, you would never think I had it, I look so well. The only give away is the splints on my hands and the slow walking.
One of my medications is Hydroxychloroquine, which is one of the older drugs prescribed for RA. There are more effective, newer ones nowadays. Perhaps your doctor suspected an autoimmune condition, when he prescribed it. However, it is used for other conditions.
I hope you continue to manage without medication, as the medication itself can cause no end of problems. One just has to weigh it all up.

Thanks Marydoll I have just googled rheumatoid arthritis and am having a 'lightbulb' moment. I have not (as far as I recall) had swollen joints though pain moving around my body is a factor. I realise that by keeping fit and maintaining muscle strength I have probably 'self managed' the condition and yes like you have periods of feeling 'normal'. I had not realised before that this too is an autoimmune disorder.

I was prescribed hydroxychloroquine for the hair loss for over a year which made no difference so was stopped. The hair loss continues! |I am currently on propranolol which was prescribed for a sudden increase in migraines which, this year,started to come in clusters lasting a week at a time ( I have had roughly annual migraines since I was 18 years old which I also self managed). This medication makes me feel lethargic and a bit depressed but I fight it.

I am living a normal life and will do so without further medication as long as I can, using Positive Mental Attitude though I cannot say my view of the current NHS extends that far. My comments on appointments are on another thread!! I will add that I have no problems with the medical staff just the system! Onwards and upwards!!!

That's awful for you, Grandma2213.
If you don't have a rheumatologist already, do you feel you can ask for a rheumatology referral? It's only when you join up the dots of symptoms, that you can get a true picture of what's going on. I would make a of all your symptoms, no matter how trivial, and go back to your GP and if you do get a referral, take the list to your first hospital appointment. Don't be fobbed off.
As I have said previously, for about 20 years, my tests were coming back negative for RA. However, when all my symptoms were written down together, it was obvious that I had some sort of autoimmune disease(s).
Believe it or not, after all these years of having a negative RA factor, I am now showing as serpositive for RA and on a hugh dose of medication.
Most people think Rheumatoid arthritis means you have sore joints. It is a horrible disease, in which your body is attacking itself. The chronic fatigue and the other conditions that come with it, makes living a normal life very difficult. It is nothing at all like osteoarthritis arthritis.
I have been told if RA starts attacking my lungs, I will be dead in months. Not a nice thing to hear, so it is so important to be monitored frequently by professionals.
On a more positive note, I do have short periods when I feel reasonably "normal", so it's a matter of carpe diem.
Good luck with whatever you decide.

Autoimmune conditions ... so annoying! After reading this I am wondering if maybe I have Sjogrens. I have suffered dry eye and dry mouth for years though the eyes have improved a little maybe due to the drops for glaucoma! (plus I have had macular degeneration, an operation to repair the macular and a cataract operation in the past few years).

I have drunk pints of water each day since before it was fashionable and was referred to ENT for problems with voice and throat (no help but joining a choir was!).

I was diagnosed with fybromyalgia which I have managed through exercise so it now only occurs when I am tired or run down. I am currently suffering with a painful foot after standing on a toy a month or so ago. (Muscle damage according to GP). I take painkillers and ignore it. Arthritis in my hip resulted in a hip replacement 10 years ago which was the best thing ever!

In years past I had mysterious skin rashes, or hives with no real explanation.

It was only when I went to a dermatologist after losing frontal hair and being diagnosed with frontal fibrosing alopecia that she told me all of these symptoms reflected an auto immune disorder which was attacking different parts of my body. She was the only person who ever joined all these symptoms together but sadly has now left the NHS and moved abroad.

Blood tests for Lupus, Diabetes and Thyroid problems were all negative.

Yes I have tried to keep fit all my life and still do but my own body persists in attacking me. THANKS BODY!

Can you use Lacri Lube at night? I found that sort of moisturises the eye. Doesn't Venus Williams suffer from it and has a vegan diet which she thinks helps? Not recommending it, however.

Is your red eye itchy or light sensitive? If it’s light sensitive you need urgent referral to your local eye unit

I was diagnosed with various autoimmune conditions,including Sjogrens Syndrome and inflammatory arthritis over 30years ago. The rheumatologist confirmed I'd had the conditions for over 20 years by that time, despite various blood tests being negative for the conditions. I retired on heath grounds at 62 at which time a flare up led me to be exhausted, in pain with swollen joints.
The dry eye (and other areas) is a B but manageable with drops prescribed by an ophthalmologist. My GPs were refusing to prescribe them because they are expensive but when they learned the specialist said they were necessary, I now have them on prescription.
Ask to be referred to a rheumatologist. So many of these invisible auto immune conditions are missed by GP's for various reasons, not least negative blood tests. It needs as expert and please get yourself referred to one. I'd begun to feel that being tired all the time was my own fault - the consultant told me I'd been managing serious health problems very well. Made me feel so much better. Plus I now get prescribed effective disease modifiers.

Thank you Marydoll

Tiredout1, I'll PM you. I have my toddler GD today and tomorrow, so it may be Friday, but I will get back to you.

Hi, I too have Sjorgrens and other problems, I work only 2 days a week now, but i'm finding that difficult at times, how did it come about that you retired on medical grounds, did you instigate it or your gp or your employer? I'm thinking more and more that I will have to go down that route too, but not sure how to go about it? I will be grateful for any info...

I was diagnosed with Sjorgrens last year, I had a lip biopsy, this is a sure way to get a diagnoses, like you, my tests were negative. It was the Facial Oral Maxilla Consultant who arranged this, but I am also under a Rheumatologist who will decide your treatment..Persist with a referral,its the only way...

I had RA for twenty years before it was properly diagnosed. Medication, including steroids, for other long term conditions masked it and initially blood tests were showing a negative rheumatoid factor. It is often difficult to diagnose autoimmune disorders. My GP at the time thought I was making a fuss about nothing, despite the fact that my mother, aunt and cousin had RA and Lupus. So I just soldiered on.
Fortunately I had a new respiratory consultant who suspected RA despite the negative blood tests and referred me 20 years ago to a fantastic rheumatologist. So I have now had RA for 40 years. This rheumatologist's care enabled me to keep working for another 18 years.
I hope that your GP refers you back to a rheumatologist. I was one of those "I don't to make a fuss" patients, but unfortunately a few years ago, as a result of "soldiering on and not saying how bad I felt", I became so ill that I had to take early retirement. Please go and "make a fuss" and do it sooner rather than later.

I hope you get some respite soon. Take care.

Thank you, Marydoll. I tried three different sorts of gel tears, before my GP agreed to refer me, but none of them proved very effective. I'm now using the ones the optician recommended, but have to use them quite a lot during the day and they're no longer on prescription, unfortunately. Quite a few things have been taken off prescription. I do have regular dental checkups and I also have reaction lenses in my new glasses which I got in May. It certainly cuts down the glare and my eyes feel much more comfortable.

Genevieve489, I have found some gel tears prescriptions more effective than others.
I have also been advised to wear sunglasses when it's bright. I have reaction lenses now, which solves that particular problem.
It's also really imprtant to have regular dental check ups.

When you post, all your own comments show as pink. Easy to find then.

Why has this turned out pink?

Thank you all for your replies. From what I've read, it seems that Sjogren's is very difficult to diagnose and it can take many years. However, if appropriate medication has made you feel better, NanaMacGeek, then it will be worthwhile for me to be persistent.
I'm on a low dose of Nortriptyline and occasional Buscopan as well as Paracetamol, but find the fatigue and flu-like aching to be the worst. I'm also using gel tears, but they're not vey effective. One eye is rather red. The GP has seen this and was happy to refer me to the ophthalmologist , but, as I said, it's a 15 week wait.
I think you've persuaded me to see another GP and ask about a rheumatologist. I realise I'm suffering from the 'I don't want to make a fuss' syndrome, which I thought I'd outgrown, but I think your point about waiting even longer to see a specialist, if I do nothing till January, NanaMacGeek, is a valid one.
Sorry to hear that your friend is having such a bad time, annsixty. I have heard of PMR and it sounds very painful.

Thanks again.

I have secondary Sjogren's, as result as having rheumatoid arthritis. I don't remember being tested for it, but when I had to retire on ill health, Sjogen's was listed on my list of conditions.
The dry mouth and eyes are so problematic. I have high strength flouride prescription tooth paste, as it can cause many dental problems; I often lose my voice (some may say, a blessing); am always thirsty; have chronic reflux and it can also cause chronic fatigue.
I recently went for new glasses and was told that I didn't need to change my prescription, as it was the Sjogren's dry eyes which was affecting my sight.
I also use gel tears and artificial saliva which helps some of the discomfort.
It's another one of those hidden illnesses.
I would suggest going to see a different GP and ask for something for your eyes and mouth to relieve at least some of the discomfort. Then take it from there. Good luck and I hope you get some respite.

I've been down this route too. I was referred by my GP to a rheumatologist following concerns from an ophthalmologist (who put what seemed like bits of paper in my eyes and declared I was just not making enough tears). The rehumatologist carried out lots of blood tests and repeated them but they were inconclusive. Hower, because of my symptoms, they thought I probably had fybromyalgia or Sjogren's and put me on a course of medication. Certainly my eyes are not so dry and some of the aches I had have diminished. Something has changed. I'd ask your GP to refer you to a rheumatologist. I wouldn't wait until January as it will just put referrals to the right specialist back further.

Hope all goes well with you.

I was interested to see your post * Genevieve* ,one of my friends has all the same symptoms expect for fibromyalgia, instead she has PMR another auto immune condition.
Her eyes are the worst symptom and cause her lots of problems.
After months she was referred to a Rhuematologist who suggested Sjogrens Syndrome but the results came back negative like yours.
She is very incapacitated and lives a difficult life.
I will tell her of your post and ask what the latest is with her.