Feeling confused, frustrated and a bit down

Hi everyone! I'm new to the group and look forward to getting to know everyone and learning from & sharing our experiences with Sjorgren's.

As I mentioned in my profile I received a positive ANA and SSB a few months ago, which is the first time I had ever even heard of Sjogren's! Along with the positive blood tests, I have many of "telltale" symptoms (digestive issues, GERD, fatigue, dry eyes & mouth, brain fog). I was recently referred to a rheumatologist, who, even with all of my glaring symptoms and positive results, stated that I don't have Sjogren's. Both my dentist and my optometrist, diagnosed me with dry mouth/eyes before I even had the blood test. Needless to say, my appointment with the rheumatologist has left me even more confused, frustrated and a bit down....

There is no doubt in my mind that I have Sjorgren's, but I am at a loss as to what to do next. More blood tests; a second opinion, etc.? This is all new and foreign territory for me! I would like to know if any of you have had similar experiences with rheumatologists and what steps you took to finally get a definitive diagnosis.

Any advice/support would be greatly appreciated!

Hi there, that can be very frustrating, my internal med dr was more of a help to me then the rumatoligist. I see a natural path now and do a lot of reading. Like I say knowledge is power!! Mabey you should make another appt with a different dr., if you had recent blood work done , to save on cost get a copy and take it to the new dr. Listen to your body, it will guide you. :slight_smile:

Thank you for the advice Lisa! I'm trying to read as much as I can on SS, as well as document my symptoms. I can deal with the dry eyes and mouth; my main concern is making sure that I am monitored for any of the more damaging effects of SS. What type of routine monitoring should I expect/request? Thanks again!

Keeping a journal is very helpful, start to write down everything, that will help you incase of a flare up. My flare ups are usually eye and stomach related, if I sneak and eat a few bites of pasta I will know what to expect the next day. Diet adjustment is helpful, start there. Sometimes we read way to much and a lot of people have other Health problems, you may have a very mild case and yes your symptoms can just stay with dry eyes and or mouth. That’s like they say sjogrens can cause lymphoma, well if you read it right, taking a lot of the meds cause it. So just be patient with yourself, this is just a life adjustment. :slight_smile:

Hi Disneygirl

Did your rhuematologist say what she thought was wrong or set up more test or appointments? Mine did not diagnose me with Sjorgrens till years after my eye doctor and dentist thought I had it. Their are many diseases that mimic each other.

You do have the option of seeing another doctor. I hope things are better for you soon.

I too went to a rheumatologist that basically said you are doing fine and if you develop more symptoms let me know. I have found a great internal person that is more helpful. I also decided that I need too deal with some of these things myself so I exercise, eat differently and use young living oils.

I say find another doctor.

Many of us have been where you are now. It you are not satisfied with your doctor by all means get a second of third opinion. I am a retired nurse and I went to one specialists who completed dismissed me because my blood work didn't satisfy him.. GOOD DOCTORS TREAT THE PATIENT NOT THE BLOOD WORK! Networking is a great way to find a good doctor. Don't give up. Keep trying. There are answers and treatment that will help you.

I got more help from my family doctor than most medical doctors. After exhausting my traditional medical options I decided to try alternative medicine and went to a doctor who took a holistic approach. I went on a anti-inflammatory diet among other supplements. Also no sugar and gluten-free were part of the treatment. I am Celiac anyway. I added 1200 mg fish oil with each meal. Gradually I have made some progress. When I first started the treatment the CRP (C-reactive protein which measures the inflammation in your body was 34. Normal is between 2-5. Four months later my CRP was 3. So it worked for me. I still have occasional flare-ups but I am soooooo much better than I was.

Feel free to contact me anytime if I can be of support to you. I have pretty broad shoulders and it helps to have someone know what you are going through. It is often hard for others to understand because many of us don't "look sick." even though we are very ill.

Good luck and don't give up.


I so appreciate all you comments and suggestions. I'm going to get blood tests results Wed and am a bit anxious about what he'll say. I am so ready to feel better. Will keep you posted and hoping all of you have a good week.

Hang in there one day at a time. I try really hard v to stay on the moment, learn all no can to know what next step is. I find whenever I get caught up in the v what is and future, I scare myself to death!

Keep us posted and count your blessings before you close your eyes each night. What haveyou energy and what sapped it? Journaling is great help to keep track of things, especially to note when something good happens as it he off set the bad times.

I'm grateful for each of you! May the angels keep watch over all of you this night.

I too have dry eyes and dry mouth. My family doc referred me to a Rheumy and my tests came back positive for SSB and ANA plus severe GERD. The Rheumy sent me to an ENT to have a biopsy of my lower lip and that proved I have Sjogren's. It's frustrating going to specialist after specialist but it's worth it. You'll finally get a diagnosis that can help you. I take Cevimeline 30 MG for the severe dry mouth and I use lubricants in my eyes and mouth at night for sleeping. From your discussion on this web site - I feel you need to see a different Rheumy. Good luck and keep us in the loop to let us all know how you are doing. We're all in this together and you'll have lots of support here. :)

Hi and welcome! I was diagnosed with sjogrens first by me eye Doctor. My neurologist said no I don’t have sjogrens. I got a second opinion and this new neurologist has diagnosed me with sjogrens. I should be seeing a rhumatologist, however my sjogrens has effected my nervous system (CNS) and that’s why I see a neurologist.

I am glad I got another opinion.

I wish you luck and please keep us posted.

Hi Disneygirl

I was diagnosed Sjorgrens in 2003 by my rheumatologist. I actually went to because I started with pain in my bones and have have family members with arthritis. I had an ANA test done and I was diagnosed with Sjorgrens. I was confused with my diagnosed. I immediately went into google and read up everything with Sjogrens. I did have a lot of dry mouth and dry eyes. The rheumatologist is the only one that can help you with Sjorgrens.

Thank you all so much! I’m going to try to get in to see my GP this week to discuss my appointment with the rheumatologist & voice my concerns. I just need to learn to take one day at a time.

I will keep you posted!

I feel so sad for all of you that had to get blood work, it came back positive and you still had to get a biopsy?! I agree whole heartedly with Snowflake when she said good doctors treat symptoms and not bloodwork. I was diagnosed about 2 years ago and the disease has gone from 0-60 for me in the last 6 months or so. My rheumatologist is wonderful and treats me according to how I feel. It may take awhile to find medications and a treatment plan that works for you. I finally found something (besides Restasis, exovac, Estrace, and OTC eye drops for dryness) that is helping me actually have a life and not be in the bed all of the time. I hope this for all suffering with SS, and also hope that all have a kind and compassionate health care provider.

I too would take your blood work to a different doctor, maybe in a slightly different neighborhood (if possible) so that they are not directly competing doctors. GP and / or another rheumatologist. With your symptoms and positive bloodwork, you likely have this illness. My rheumatologist dx’d me right away, but sometimes I feel doesn’t think SS is a big problem. Check this forum for good overall advice and continue to ask questions. Use Biotene or Squiggle toothpaste, good preservative free eye drops, do your best to eat good foods and avoid sugar and junk food, avoid stress and /or learn to manage it well, drink plenty of good quality water and do your best to get a good night’s rest. These are some of the good basics …sounds simple, but it does help A LOT! Wishing you well, you will get through this!

Thanks again for all of the advice. I just scheduled an appointment with my GP for this Wednesday. She's very thorough and I feel/hope that she will do everything necessary to help me manage this illness and keep things in balance.

An interesting coincidence is that she, herself, is dealing with an autoimmune issue. She confided that it's taken over a year of visiting various doctors and undergoing numerous tests to even receive a diagnosis of a non-specific AI disease. She said that she was even seen at the Mayo Clinic in OH and was essentially told that nothing was wrong with her. It's pretty disheartening to hear that even a medical professional is treated this way.

Wishing you all a wonderful, happy & healthy Monday!

Its a tough thing for sure. Its important to understand that while docs can treat symptoms those same symptoms don't always equal a disease. There is for SS some very specific objective tests and parameters for the SICCA symptoms (dryness) because there is a pretty specific physiology behind them. If the objective testing doesn't find that physiology that doesn't mean there isn't something wrong, it only means that the root of your problems is something else.

It also means that some treatments won't/can't be used. If the process the medications effect is not clearly present, many of the current medications can cause some pretty significant events. Because outside of rheumatology circles SS is recognized as syndrome rather than disease it gets thrown around a fair bit. Thats fine so long as the one throwing it around does not play outside of his own playgroup. You can usually find someone willing to do that if you shop for enough "second opinions." Make sure its a second or even third opinion you are after and not what you want to hear - big difference. The results of that kind of shopping rarely pay off and usually result in "new symptoms" some way out of the norm.

Good luck

Great into tj. I think I want so badly to feel better that I want a definitive diagnosis and want it NOW! You make a wonderful statement and I will try to find the button for patience and trust my doctor as he is highly regarded in our area. Thank you for honesty and clear thinking as mine is rather foggy.

Believe me, I’d rather not have anything, but it sure would explain all of the symptoms I have been experiencing for the last several months. I’m just confused that the rheumatologist was so quick to say I don’t have SS when the reports placed before him (positive for Ssb and have many of the physical symptoms) sure do point in that direction.

My Rheumy told me something was going on and he thought it was SS but the blood tests will tell the story on Wed. He wouldn't even talk treatment possibilities until he had the results. I just want to feel better and not be totally wasted just getting a shower and getting dressed. My eyes are better right now so I guess the Restasis is beginning to work.

Wishing you relief Disneygirl and a diagnosis you have confidence is correct. Keep us posted.