Do I have Sjogrens ??: So, I saw my... - The Australian Sj...

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Do I have Sjogrens ??

Bettyboop71345
Bettyboop71345

So, I saw my Rheumatologist today. She doesn't think I have Sjogrens. Positive ANA, but blood work for Sjogrens was negative. Lip Biopsy suggests Sjogrens. Parathesia ranges from tolerable to miserable. I have virtually no pain.She prescribed 300 mg. Plaquenil daily 10 days ago.

She tells me my symptoms don't present as classic Sjogrens. I'm to wait 3 to 4 months to see if the Plaquenil helps ! OMG, what to do about this parathesia, severe dryness mouth, nose, eyes, hands, face !!!

22 Replies
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Hi Bettyboop

Your symptoms sound like mine and I do have Sjogrens.

However, I do get extreme joint pain and utter fatigue as well as rashes.

I also get digestive issues.

In sum, Sjogrens is not to be taken lightly.

Plaquenil is first line of meds so you are being treated thus far. Eye drops and mouth gels/sprays help too.

I found the book The Sjogrens Survival Guide, (Rumpf, Hammitt), to be a great help. Though, I did cry at first read because, at last, I felt understood! Lol.

I also joined BSSA (British Sjogrens Syndrome Association), you can Google, and use telephone helpline, if you wish. I became a member and I do not regret doing so. I receive up-to-date research and patient tips.

Good luck in your journey. Learn to pace yourself, be kind to yourself every day.

The only joint pain I experience is in my fingers, but it's not too bad. And so far, no rashes. It's mostly my skin...I suffer severe parathesia. Some days are worse than others. Right now it's mostly my face. Thanks for your suggestions. I do use Refresh Drops frequently...Thanks again and be well !

Thank you.

I do suffer parasthesia though only at night now. My feet burn and tingle periodically.

One of my first symptoms was parasthesia of left side of face. First time, I was singing hymn at church service, left side of face went numb. I couldn't get my words out. Quite frightening then. Now, I don't really get it on my face.

I think once we understand why symptoms occur, it all becomes less frightening. And, belonging to support groups help. Most symptoms are often experienced by other sufferers.

Hidden
Hidden
in reply to Bettyboop71345

I think if your lip biopsy and ANA point to Sjögren’s then your symptoms do too. I had RA type symptoms for a few years. Sjögren’s can mimic RA - especially in the hands. I also had the same problems with neuropathy as my main symptom just as you describe.

This IS classic seronegative Sjögren’s and I think you need a more knowledgeable rheumatologist!

My ANA and lip biopsy were highly positive and this is the alternative way it’s diagnosed. I posted here the other day about this with a link - maybe you should print it off and show it to your rheum?! acrabstracts.org/abstract/s...

The parathesia I experience is not pain or numbness. It feels like hairs on my face that can't be brushed away..Pricks on the rest of my body. It causes me to be extremely agitated, so I'll take Seroquel to calm me. It feels like I have little things crawling on me !!

Yes, I can see how that would agitate you. Very unpleasant sensation.

Wishing you well.

Hidden
Hidden
in reply to Bettyboop71345

I have exactly the same kind of parasthesia now. First came pain though. But Sjögren’s is a syndrome so no one person will present exactly the same way. Your rheum should know this. X

Bettyboop71345
Bettyboop71345
in reply to Hidden

Well, she apparently doesn't ‼️

Hidden
Hidden
in reply to Bettyboop71345

It seems not!! But she won’t be first or last rheum not to know much about Sjögren’s sadly. Can you find another or are you okay with her - given that she has at least put you on Hydroxichloraquine?

Really sorry to read about your difficulty getting a diagnosis sorted. The BSSA that have been mentioned have been a definite help to me. Their helpline is exceptional. I had real difficulty trying to get a Rheumy to take me seriously. They put me onto a Dr Elizabeth Price, based in Swindon. I went to see her as (one off) private patient and she was marvellous in cutting through the ignorance that seems to prevail when it comes to Sjogren's. Thanks to her my Dr finally prescribed some meds to help with the dryness etc and her letter to my local Dr finally pushed them to arrange for a lip biopsy to get a firmer diagnosis. She also explained things to me in a way that gave me total confidence in her understanding of what I'd been dealing with. Check them out and give them a ring, i'm confident you wont regret it. Hope you get some serious help soon.

My wife has RA and Sjogren’s and she tested negative to everything including biopsies of her synovium and her parotid gland‘s. It’s not uncommon for people to have atypical signs and symptoms and to test negative when they have Mixed Autoimmune Connective Tissue Diseases. Fortunately her Doctors fully know that.

Thank you for the encouragement, Mike. Not that I want to have Sjogrens, but I must know what is happening to me ! I saw a new PCP yesterday and she was wonderful ✅ She suggested I wait the 3 months to see if Plaquenil helps and if not get a second opinion. Obviously my current R thinks it's all in my head, even with the positive lip biopsy !! It will be difficult dealing with the parathesia but I see no other option. Thanks again !

Lip biopsy is the ‘gold standard’ for testing so if it was positive then I’m afraid you have sjogrens! What kind of specialist are you seeing that doesn’t know only 70% of people with sjogrens test positive for ANA

Check out the following site, perhaps print off the information and ask her opinion? Lol 😜

sjogrens.org/home/about-sjo...

Well, the lip biopsy "suggested"Sjogrens 😳 Not sure if that means it was positive ????

Suppose I misspoke when I said it was positive ‼️ So very frustrated 🙁

Not sure what else it would suggest?

I just don't know either ?? Depending on the experts hasn't been very encouraging 🙁

Parasthesia's take different forms and your feelings of slight hairs brushing your face is still considered a parasthesia. Mine has been mostly a burning/freezing sensation in my legs and patchy on arms, trunk and face however I have also had the feeling that drips of water are on my legs and when I try to brush them away, of course, nothing is there.

I've also had electric like currents in my feet at times where I think there is a loose electrical wire under the floor.

So neuropathy is quite a paramount symptom accompanying Sjögren's syndrome and if other symptoms co-exist like the hallmark features of dry eye and dry mouth then it is more likely to be SjS. Dry eye is easy to test for. Don't just go by how they ‘feel'. For me though significant dry eye and dry mouth came later. Neuropathy, pain, balance problems were my first overt symptoms.

Regardless of a diagnosis, there are some natural things you can try. If it is tingling, it may be a result of an allergic reaction to something you've eaten. This is common to many of these interrelated disorders. Try to eat a simple diet without a lot of additives for a couple of months or more. After a few weeks add a food and try to figure out what may be causing a reaction. Mine are high acid foods.

I've been feeling generally better and my skin is not so dry since I've increased antioxidant intake through food and also as supplements. It has also helped with dryness especially my eyes.

For lip eruptions and cracking, I take a homeopathic treatment, Natrum Phos, which is just a cell salt/sodium phosphate. Get a medium dose and take when your lips start feeling less than supple or start to crack. Take a few doses and then see how they're doing. I also associate my lip problems with eating high acid foods. If I avoid them and a few other things that seem to cause a reaction, my lips don't crack. When I cheat and have a taco I have mild reactions. If I eat two tacos and then the next day have a curry, they get much worse and take longer to go away. I think I react to coconut, too. :(

For sinus stuffiness, dryness and post-nasal drip, I've found that Sinus Formula essential oils help a lot. My sinuses drain better and I cough less. I've recently tried a salt inhaler. I had to order it online. But something has improved as I'm sleeping better and longer. I am not being awakened by a runny nose at all! Don't hesitate to using a saline nasal spray without medications.

I also have digestive problems and find a GOOD probiotic helps. And I am gluten and basically grain-free.

Nobody really understands these multiple auto-immune disorders so don't let a diagnosis stop you from pursuing anything that helps your body function better and diminish inflammation and annoying symptoms.

Hi nettyboop71345

I know your post was ages ago, but it seems like your doctor's should have referred you to a neurologist to test your parasthesias, and maybe test for small fibre neuropathy.

I gather from my reading that those who present with neurological symptoms early in sjogrens may be seronegative and may also have less severe dry eye and mouth (initially). Sjogrens is the second most common cause of small fibre neuropathy after diabetes. There are also meds to help with some neurological symptoms which could be worth trying if your docs will consider them.

Given it is further down the track, how are you going with diagnosis?

Jar1973
Jar1973
in reply to Jar1973

Sorry Bettyboop not Betty boop lol! Bad finger typing 😁

Hi Jar1973,

I was just tested for Small Fibre last week. Won't get results for a couple of weeks. Actually my parathesia has been a bit better recently... I'll have a couple of good days and then it returns !! Maybe the Plaquenil ?? Right now I'm sick... Bronchitis ! Thank you for replying to me👍🏻

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