Can all this be due to Sjögren’s?

I think for me it started when I was young but it’s hard to be sure as I’m Hypothyroid too. The sensory symptoms started about ten years ago with the early onset of menopause - sense of smell and taste started changing about 7 years ago with the onset of RA type symptoms. I think unstable index finger might be double jointed/ hypermobile - possible EDS - it’s been sore for about 18 months.

I am believed about Sjögren’s and autoimmunity by my rheum and doctors because of my very high plasma viscosity.  

But the neurologist makes me feel that the extent and the impact of the numbness is all of the mind - it’s “just” small fibre neuropathy - no big deal! which in turn makes me more scared because my worst symptoms feel so paranormal! 

Sorry you share my symptoms Christine (but relieved to find others who understand). Do you have internal tremors and if so when did these start? Are you happy to lump it all together as Sjögren’s? If so do you, like me, feel it would be easier to get support  if it were another disease such as MS or RA? 

I am one of your new SS sisters! I live in San Francisco Bay Area, just diagnosed with SS yesterday by my family care doctor after blood tests. I am scheduled to see a Rheumatologist.

My main symptoms are lost of smell, limited taste, very dry mouth, hard time swallow food.

I am so happy to find the support group, I was initially very scared.

Linda

Welcome Linda. I'm in Austin, lived in SF for a few months back in '74.

You mentioned you were seronegative, did you end up getting a salivary gland biopsy? My levels are normal but have dry mouth eyes and inflammation in my throat. I'm very sure I'm part of the 30 percent with normal Ana levels. My doc doesn't believe me. I also have celiac which makes it more probable.

My ANA is positive but my anti Ro & La are both normal - IgG and IgA both elevated and inflammatory markers always high.

I was diagnosed by lip biopsy, which was as positive as could be but first (mis) diagnosed with RA five years earlier. 

Hi Jeremy,

Back in the 2007/2008 I was seronegative. No-one tested me again for the intervening years until 2015 when I went to my GP and insisted I be tested for the ANA and ENA panels. 

My GP complied after me justifying why I wanted these tests done. A few days later I got a call to say she wanted to speak to me.

My ANA was 1:1280 and my anti Ro's were positive but not my anti La's.

So the answer to your question re. lip biopsy is no, I haven't had one done.

Thanks, my ana and c reactive protein are low ...my doctor's aren't willing to push for a biopsy or even consider this disease but I have every symptom along with newly diagnosed celiac. The brain fog, dry ears and mouth and soar throat are horrible. I'm really trying to push them but even the rheumys have been dismissive

Thanks, I'm glad my markers are normal but there are so many seronegative stories out there. At some point, I hope to get a diagnosis as my symptoms don't all seem to correlate with my celiac. My dry eyes and mouth are bad

Hi Jeremy (my son's name also),

It's a process of elimination in some ways. Seeing that you have one autoimmune condition (Coeliac disease), as you said, it places you in the higher risk basket to have another autoimmune condition.

Are you on any meds which could explain the dry eyes and mouth other than Sjögren's Syndrome?

Have you been to an ophthalmologist and had a Schirmers test done and a tear breakup test? If these show to be abnormal this further adds to your arsenal.

Ultimately until (and if)) your ANA's etc become positive then all you can do is treat the symptoms. Ask your ophthalmologist what you need to do to prevent major corneal damage if your Shirmer's test reveal < 5mm tears (depends on your age too). Do what s/he says in terms of drops/ointments etc.

Ask your GP if s/he thinks your mouth mucosa is dry? (Obviously don't chew gum or drink just before going in to see the doc). 

For your dry mouth, chew gums, use Xyliments or whatever it takes to keep your mouth lubricated.

Then if your symptoms continue, ask for your ANA's and ENA's to be done say every two years. Don't be like me and go for eight years before asking to have them done as I do not know at what point in those eight years that I became positive. Once I was proved to be seropositive, I was more believed and then sent to a Rheumatologist.

Hope that you get some answers soon.

There are a number of posts regarding the topic of lip biopsies on this board.

I'm not on any meds, I'm going to see another rheumy next week and ask about the tear test. My vision is blurry far and near. One if my first symptoms was tingling in mouth and cheeks with sinus problems , followed by neuropathy. It's kind of difficult in the docs say if I had this particular disease , it would show up by now considering all of my conditions. I've been through the gauntlet, MRIs, lumbar puncture, two emgs, muscle biopsy, ten different RA, ana and c reactive protein tests. I've had immunization tests, motor sensory antibody panels, Lyme screen .....probably more. Only thing negative is vitamin d was low, reoccurring gastritis and antibody for gluten. No cause yet as to esophagitis and dry eyes mouth and muscle twitching mainly in the eyes.

How long have you experiencing all these symptoms? 

I developed most of my symptoms within the first month of getting ill with Sjögrens, yet it took years to develop antibodies.

Were you able to get your vitamin D levels up & keep them there? Do your eye muscles still twitch?

I've had dry eyes and mouth write a while, the sore throat and gastritis just past year

I asked because I used to have an ophthalmologist who said that eye tics signified eye allergies. For me, at least, that was correct and elestat helped me out. Apparently all the allergy tablets in the US do nada for eye allergies. Don't know if this will help you, but for sure I know eye tics and twitches are medical issues.

Jeremy - I think you should start a new thread of your own asking this.

I keep getting allerts to this tangent because it was a thread I started about Sjögren’s as a full systemic disease, rather than just eyes and mouth dryness.

I realise that yours started as neuropathy and now you are struggling hard to get a diagnosis for other stuff such as gastritis. But you will get many more answers if you post yourself I think.

I would say that you need to get a lip biopsy done if you want a definitive diagnosis. Some people aren’t represented by bloods and for some the idiopathic label hangs about until something finally shows up such as Vasculitis or other. So many conditions list dry eyes and mouth, gastritis and neuropathy as well as Sjögren’s.

I wish you luck with getting answers that make sense of your symptoms. 

This will be my last reply as I didn't mean to hijack anything. I'm fully aware this is a full systemic disease, I've had neuropathy myopathy full digestion track inflammation with dry eyes and mouth along with confirmed celiac and now have hypogonadism. I'd say at this point, it's certainly affecting every system except major organs, I've been cleared of all neuromuscular and mctd including lupis. I'm sorry you're getting so many replies, that often happens on these threads as I get them on the ones I started as well but I just try to help in anyway I can. Good luck to you.

My point is that your much wider problems require a new post to which you will get many more replies.

It’s not your comments that are bothering me but I posted this to highlight things other than ocular and oral dryness - and yet these Sicca comments abs questions keep popping up! 😎

Wow! Don't know whether to say 'congratulations' or 'commiserations'. It certainly has been a journey for you Jeremy.

At least you now have proof that the many symptoms you have been experiencing has been centred in reality and not fantasy!! As if you didn't know that already! Anyway good work for persisting and getting extra diagnostic testing done.

Thank you, I got into an argument with my doctors when they told me I didn't have it because my markers were all negative. I told them how in the world do they not know about seronegative sjogrens. They told me to let it go. So I found a dentist who does saliva DNA testing. I'm taking this to my docs tomorrow and asking them to tell me again how I should "let it go"