I have all the symptoms for SS for years

Thisis so hard. i am in a horrible situationmade Imyself uvalium   now i cant swallow complete panic attacks........the Drs give that cause eye problems and anxiety and other every person is different..I developed 4 auto immune with sjrogens.....and dry every where. I pray every day that I can get the courage to get off valium but it helps sleep....I need to go to dentist andcant put my head back and i panic......my teeth were good a yera ago yet i probably have cavities, Im older and i had this for a year. I have no positive blood test yet except ra....if you are not anxoious you can take theese drugs plaquenil

esophagus spasm also and bad reflux.I lost all my friends and people do not want to hear about Therapist . Anti depressant make you dry so  almost everything .......love to you keep in touch      sheilabI live in Los Angeles so dry here

Hello deanne, from what I have learned this is a very common autoimmune disease but difficult to get diagnosed. My neuro actually ran tests on me to see if this is what I had. I had an ESR, Sjogren's test (Ro ans LA), and ANA tests done. I hear there is a lip biopsy also.  I do NOT have dry eyes but some of my symptoms are dry mouth ( I choke a lot !), at times severe joint and muscle pain, dry cough, total exhaustion after maybe 15-30 minutes if moving (if I can even get up). I am also dx'ed with Fibromyalgia, Hidradenitis, and possiblr MS. 

A lot of these autoimmune disorders mimic other illnesses and can "attract" more of each other. I am still learning as I go. 

I recommend having the 3 tests I had to see how they come back.  Please keep in touch and wishing you the best!

Your story sounds like mine although I have also got RA my Sjogies is called 'Secondary Sjogies" (still the same thing though).  I have all your symptoms dental decay, dry eyes - you need to use Hypromellose Eye Drops.  On the subject of 'gastric problems' I presume you mean 'terrible chronic indigestion and very loose stools'.  I went for gastroscopy and endoscopy - they couldn't find anything wrong with my digestive tract.  It transpired (had to find this out for myself) that my Sjogies has advanced to 'wheat intolerance' (another symptom)  - stop eating wheat (use oats instead) and see what happens.  It took my rheumatologist 20 years to 'diagnose me' I knew about it 20 years ago as my optician recognised it.   If you ever find yourself developing 'itchy skin' another symptom they don't seem to recognise - buy yourself some over the over counter anti-histamines - they work like a charm. 

good idea to get tested for SS and CD (celiac disease) because often CD causes, or is connected to SS.

 

Now you've learnt of Sjogrens perhaps you could ask your GP to refer you to a rheumatologist who will be best placed to confirm or rule it out. Do you have much joint pain at all? This is usually a symptom too as it can present very much like Rheumatoid Arthritis and even MS. Mine was misdiagnosed as RA and then as MS so tgis is how I finally got rediagnosed with Sjogrens.

Hi Deanne,

Could be Sjorgrens so go to your GP and ask for blood tests

Deanne, that is what happened to my good friend 22 years ago. Ask your gp to refer you to a specialist. Even though I have had polymyalgia for over 20 years, I have all the symptoms of sjogrens except the dental ones. Change your diet. Try gluten free. Hope this helps.

Sally86809

Sometimes you need to be your own advocate.  Try to get up in to a good Rheumatologist.

Agree with Margot in that you might need to be your own advocate and seek out 1 specialist who will be your support. It might be a dentist. It might be a rheumatologist. It might be the gastroenterologist. It doesnt sound like its your GP, so get referred on to specialists or seek a new GP. You need someone with an interest in/knowledge of, or prepearedness to find the knowledge of auto-immune generally and SS particularly. Its not easy, but you might need to do some legwork 1st and when you find the right team you will feel better about treatment options and feel supported even when they might say "there's not much more we can do." Best wishes.

Don't know what country you're in, but please get to a rheumatologist. Most General doctors just don't know enough!  Gluten free diet really helps, but you may need to get on Plaquinel if you do have sjogrens. Best of luck!