I've been sick for years and today I was told that maybe/probably it's Sjogren's. When I read the list of symptoms it finally fit me!! After all of these years of suffering it's good to know this dreaded thing has a name. I had blood work today and gallbladder ultrasound tomorrow. I saw the eye dr. today and he agreed. My ENT diagnosed severe dry mouth and degraded taste buds. I didn't even think to tell anyone about my lack of snot and my dry sand filled eyes. Today I finally just blurted out all of my current symptoms and forced my dr. to hear me. I was just fed up with being ignored and not heard, now maybe I will be able to get somewhere. I have awful pain under my right ribs and around to my upper back. I hope this doesn't mean something bad. I've had rib pain there for years but over the past 6-8 weeks it has gotten much worse. We'll see what it is I guess. I have some focal lesions in my brain that we thought to be MS, now I'm wondering if it is Sjogren's. Chronic diarrhea off and on for years with no answers on colonoscopy either. I have psoriatic arthritis as well as parasthesias in my limbs. Also I have suffered with severe depression and anxiety for many years too. My brain fog has gotten just severe in the past few months....just awful. All of the joint/muscle pain I've had over the years have been transient and only gotten worse as time went on. I have spinal and cervical arthritis too. I spent 2 months this year with some kind of sleep problem where I couldn't wake up. I was sleeping 14 hrs a day and I would still be severely sleepy. I couldn't wake up and I would fall into the deepest sleep I've ever had.I was afraid I would go to sleep and go into a coma. I told my dr. 3 times about this and he just asked me if I snore. Go figure. This has seemed to resolved quite a bit. I'm up more and not nodding off 20 times a day. Three weeks ago I had a flare up of pain and I could barely walk or stand for 3 days and the pain was constant for about 10 days. I just wish I could have had just ONE dr. who would have put all of the pieces together instead of 6 different specialists doing their own thing and letting me down. OH well at least now I have some idea of what I really have been dealing with. Thanks for listening to me complain. I've kept this all in
Your doctor asking if you snore was trying to find out if you have any sleep apnea. It seems half the world wears CPAP's to breathe at night (including my husband). I really think it's keeping him alive. He does not have SJS, I do. But he has congestive heart failure and the CPAP keeps him breathing quite smoothly through the night. Maybe you should talk to him about a sleep study. Docs are really into these tests lately.
My husband can fall asleep when we are talking across the living room. He can sit in front of tv and in a minute he's nodding off. It is quite a bit better since he wears the CPAP and gets some quality sleep.
Lucy
Jack, you sure do have a lot of classic symptoms. I'm not sure about the pain in your upper back/ribs. Just two things to think about. Many of us also have Celiac disease which could answer the diarrea part (that was my problem). Also, just know that many doctors don't fully understand Sjogrens and may go solely on positive blood work but about 40 per cent of Sjogrens people test sero-negative on blood work. Myself and many others were confirmed via a lip biopsy.
I just say all this because I'm so frustrated at uninformed GP's not taking people seriously.
Steve
G'Day Jack
I just want to say hi..glad you have got some diagnosis..and I hope you get a full diagnosis sooner rather than later.
One thing we all here have similar symptoms...yet at the same time we have unique sets.
Your Doctors seem to be at last onto something.
All me best
Hi Jack :)
Welcome to Sjogren's world. I hope you find the site useful. There's lots of info and lots of support and it's a great place to come to vent, to ask questions and also to 'socialise'.
I hope you get the answers you are looking for soon and some treatment for your discomfort.
Take care - Scottie :)
I finally got my test results today and the blood work for Sjogren's was ok this time. I have had positive ANA off and on for many years and the dr's throw around the word Auto Immune disorder but that's it. My family dr. told me over the phone that I don't have Sjogren's because of the blood work. He was not happy that the eye dr. requested the work up so he's not going to go any further with testing because he might have to admit he has been wrong. Sorry to bash but that's the way it is. I'm not stopping now. I see an ENT at OSU in Aug. and I will talk to him about everything and request more testing and a referral to a rheumatologist. I've seen so many "ologists" than I care to count My dryness symptoms are worse than ever. I can't swallow without fluid or talk much without drinking. I have a liver problem now and some kidney problems, I'm wondering if they could be from the Sjogren's? Sorry if I sound angry but I've spent years trying to find help for this stuff and I always just took the dr's words as the final word but now I'm fired up. Ha! Any suggestions on questions for the ENT would be appreciated. Thanks jack P.S. I'm F and 56 living in OH.
Yes Jack the Liver and Kidney problems can be from Sjogrens. I also have liver problems. I'm surprised that the docs are so doubtful even when you have had positive ANA. I just read an artilcle that said that its very commen for men with Sjogrens to have negative blood work so you certainly have so many indicators.
Under normal circumstances I would say Congrats, but I'll just say "AT LEAST YA NOW KNOW. WELCOME TO THE PARTY!" :-*
Jack, Welcome to our site. You sure do sound like a sjoggie to me. You are wise to get on a roll and get answers as you sound like you are all of a sudden having more issues.
Have you seen a neurologist? Yes, sjogrens can cause focal areas in the brain. click the "articles" on the home page on this site and you will find a slug of information that you can print to take to your doc. You do not have to have positive blood work to have sjogrens. Many sjoggies are seronegative. I was sick for 40 years and didn't have positive blood work until 2003 or so.
Sjogrens can cause gall bladder problems and can affect the lungs, eyes, pancreas, liver, gall bladder, neuropathy in all limbs, hands and feet, and just a whole bunch of things. It can also give youo the worst case of heartburn and gastric reflux disease. We don't make enough saliva to dilute the acid produced by our stomachs. This causes the acid to try and chew its way through the wall of our stomachs and esophagus.
We have sinus infections and bronchitis a whole lot because our mucus is less and not normal. Because it is not normal it doesn't protect us from infections as well. I have lost hearing in one ear from Sjogrens which is a neuro or sensory effect. Sjogrens can cause problems with the tendons. Carpal tunnel is very common as is problems or tightness and pain in the achilles tendons.
If your GP won't take you seriously find yourself another one. Maybe have a visit with yours and tell him how you feel and ask him if he is willing to listen to you and cooperate. Sjogrens is not just dry eyes and mouth. It is a disease to be taken seriously. Give him this website address and tell him to learn for himself. It does get to be a pain trying to get diagnosed. Anger is very common but you will find that you will have to let go of the anger eventually cause it wears you out emotionally. I went to so many doctors and spent so much money on this. My hubby was good about helping me do this. I was darned if I was going to go to my grave without a diagnosis. I am an RN and I knew that this had to be autoimmune but no one would listen to me for years. Good luck and keep us posted. Irish ;D
Jack
Apologies did I see you said you were 'F' for Female..just thought Id clarify as our usernames sometimes cause confusion.
Cheers
Hi Jack,
Let me also welcome you to the SJS World! Please do look around as there are so many topics and so much information that it's almost scary!
I'm sorry that you've not been feeling well, but I'm glad to see that you're not letting the doctors off the hook! Can you find a different primary? I know that you've seen a lot of 'ologists, but have you seen a rheumy yet? If you have, what did he say about this?
What kind of eye doctor did you see? An optometrist or an opthamologist? What does he recommend for your eyes?
Good luck with the ENT at OSU!
Hang in there and take care, and please keep us updated!
Patze
Do you think that your rib/back pain might be from your lungs? Is it worse when you move/breathe? It might be pleurisy, which is another symptom of SJS.
There's a write-up here http://www.mayoclinic.com/health/pleurisy/ds00244/dsection=symptoms, but I've had pleurisy twice and didn't have a cough most of the time. It lasted for months. The first time I had it, I thought I'd broken a rib it hurt so much. I had been diagnosed at a walk-in clinic, but I still went to the ER a few hours later and got a chest X-ray. They agreed with the pleurisy diagnosis. It finally cleared up after a few months (there's no treatment beyond pain management), and then came back a few months later.
That all happened when I developed autoimmune hypothyroidism (Hashimoto's). I wasn't diagnosed w/ SJS until a few years later. It was funny (not ha ha) that my doctors always doubted that I'd really had pleurisy, not having seen the evidence themselves (it hurt too bad to wait for an appointment), as it's a strange illness for a young woman (I was 28 when I had it). When I went to my rheum for the first time last spring, and he ran through symptoms I might have, he nodded when he got to lung problems or pleurisy and I said that I'd suffered from air hunger and later had two rounds of pleurisy. It was nice to finally have someone believe me (so strange that I'd had confirmation from TWO docs, yet I was doubted).
I also had pain in pretty much every joint for a while (the symptom that first led to my Hashimoto's diagnosis) and horrible sleep issues (always tired, napping often, not being able to sleep at night).
Autoimmune diseases are tricky. A lot of them share symptoms (my dry eyes were the result of my thyroid disease, not SJS, at first--I only learned I had SJS when adjusting my thyroid meds stopped helping my red eyes), and they often show up with other autoimmune diseases (I think most of us here have more than one--I've got four). So, your symptoms might all point to one disease eventually, or they might point to two or more diseases. The elevated ANA means that something is going on with your immune system.
Did they give you specific numbers on any of your lab results? My docs always has them sent to me, too; you might want to ask yours to do the same. Do you know how high your ANA has gotten? Have you had a TSH test? I'm not sure what the tests are for Celiac disease, but that sounds worth looking into, as well. Also, are you stuck w/ your current doc or can you make a change? Can you see a rheum w/out a referral? That's a step I'd take. Maybe you can get a lip biopsy, which I understand is a more sensitive test for SJS. You certainly do seem to have a lot of the right symptoms for a diagnosis.
Best wishes for answers soon.
Sorry for the name thing, I am female. I've been called Jack for years, short for Jackie. I'm going to get my blood test results from the pcp tomorrow. He did tell me that I have high C-Reactive Protein and liver function. Fatty liver. My optometrist wants to put in plugs whatever that is. I'll have to research that one first and maybe see an opthamologist instead? I'm going to try to get a referral to a rheumatologist asap and take all of my test results with me. I'll also talk to the ENT in Aug. about all of this too. SOMEONE has to listen to ALL of my symptoms. I have a small ovarian tumor that is getting checked out on Wed. and I have precancerous lesions on my tongue that will get follow up in Aug. so I'm just overwhelmed. This primary care doc is getting fired, I've tried to talk to him about his listening problem but to no avail. Time to move on even though I like the guy. Thanks everyone for your support and comments. I'll keep you posted.
Jack, Didn't your optometrist put you on Restasis drops for your eyes. If you are having the druthers about your optometrist find another eye doc that knows what sjogrens is!!!! They should all be very in tune with this disease and its affect on the eyes by now.
The Restasis works and if your eyes are bad you probably need them. It is the only approved treatment for dry eyes. It is Cyclosporin and it treats the inflammatory process in the eyes that prevents the tears. If your eyes aren't so bad it doesn't take as long to improve them. Make sure the eye doc gives you steroid eye drops for about 2 weeks before you start the Restasis. This helps decrease the inflammation so the Restasis drops don't burn as bad. Good luck.
My daughter-in-law is an optometrist who is very up on the sjogrens because I got diagnosed the around the time she graduated and she really researched,etc. She has worked with some opthalmologists who haven't been as tuned in to the sjogrens so make sure to ask to talk to a nurse and ask about docs experienve prior to making appt with new eye doc. Irish ;D