Sjogrens

[orange33]

Hi,is there a blood test for Sjogens. I have perifaral nathropathy very severe.

My eyes in the morning are a struggle to open.Told by Neuro Dr Sjogens? just prescribed eye gel. My RA Doc didn't really explain the condition and wasn't that interested or concerned.

Keep well

[MichelleHarris]

Hi orange33. Sjogrens can be seen on an ultrasound scan of the neck but a lip biopsy is the definitive test I understand x

[orange33 in reply to MichelleHarris]

Hi thankyou for reply. Strange you mentioned neck as been having some weird feelings there,comes and go though. Stay well.

Will peruse this more when things have calmed down.

Thanks again.

[MichelleHarris in reply to orange33]

hopkinssjogrens.org/disease...

[MichelleHarris in reply to MichelleHarris]

No its lucky if you find a conscientious one. My symptoms started in 1990’s but its only now after years of suffering and poor health, damage to my eyes, joints, Thyroid and peripheral nerves that they have given me treatment. The Opthamologist saw me for three minutes last year although I’d gone double sighted. You do really have to do your own research hence HU is so popular x

[Littlemisssunshine87]

ANA bloods SSA antibodies helped to diagnose mine along with symptoms etc. I had enough evidence to diagnose without a lip biopsy (words written by my rhumy) and USS of glands were negative - this will only be positive if you have unfortunately had damage to them which is irreversible, I will be having yearly scans now to keep check on them as per my rhuemy instructions. There isn’t one definitive test for Sjögren’s as such. That’s why it can take so long to diagnose. Good luck xx

[orange33 in reply to Littlemisssunshine87]

Hi, thanks for reply,it looks as though I'm going to have to follow this up abit more than I have done.i have had ct and MRI scans awhile ago. At the moment though I'm going to have to wait till things calm down. Stay well x

[Hidden in reply to orange33]

Lots of rheumatologists are very behind the times with Sjögren’s and think it’s just dry eyes, mouth and misdiagnose as Fibro plus sicca - they aren’t interested.

You need to find a more up to date rheumatologist with a special interest in Sjögren’s - or failing that sometimes the Vasculitis and Lupus ones are better.

I was diagnosed by lip biopsy and didn’t have any problems - it’s a minor procedure similarly invasive to a lot of dental procedures really - no big deal at all for me and it secured a firm diagnosis.

The people with seronegative (ie blood negative / lip biopsy positive) Sjögren’s tend to be those most affected by small fibre neuropathy and other neurological features. I know I am.

Best of luck.

S7🌻

[orange33 in reply to Hidden]

Hello. I'm going to bear this in mind when I next see my Rumatoligist and consult my GP also my Nuero D.

I will just have to wait for the present situation regarding appointments to calm down. My RA doc was very evasive.? Keep well and thankyou.

[harmony2 in reply to Hidden]

@Hidden,

So true: clinical staff seem to think it’s “just Fibromyalgia with dry eyes and dry mouth” but it is so much more to Sjogren’s!.

How did you get your neuropathy diagnosis figured out? I’m really mixed and wanting to pursue this because although I know I have nerve pain especially in my legs and especially at night (everything from what feels like a gang of ants biting me, to sharp pains in legs, to burning soles of my feet, to pain in lower half legs from calves down the ankles). I’m not really interested in taking more medication so I figure maybe it’s pointless to get it properly diagnosed. Please share any advice or observations from your experience with neuropathy.

[orange33 in reply to harmony2]

My Nuerologist confirmed my PN by a blood test. I was told it was rare and I am rather badly affected to the point my hands are also affected. It is something to do with anti-MAG antibodies. Ihave had two infusions of Rituxamab which has helped.

Because of lockdown further treatment has been suspended.

My Nuero doc has been brilliant and very helpful. I have not had a test for Sjogens when I last spoke to Nuero doc I mentioned I couldn't open my eyes when waking up thinking this was because of my PN. Sjogens was mentioned and I was given night eye cream. I hope this has been some help to you.

[Bayli in reply to Littlemisssunshine87]

Hi there. What does USS stand for? TIA

[Littlemisssunshine87 in reply to Bayli]

Ultrasound scan

[Bayli in reply to Littlemisssunshine87]

Thanks for replying. I was told and I have read that the lip biopsy for diagnosing Sjogren's is the gold standard. I was all over the place with inconsistent symptoms to clinically identify SS, however, thank God the rhumatologist was smart enough to follow her hunch and it only took me 6 months under her care to get a diagnosis.🙏

[SusieW2]

I was diagnosed via a blood test but that was more than 15 years ago. Evidently there is a pattern of the T, B and another type of white blood cells that indicates SS. It seems there are newer tests as MichelleHarris writes about.

Re: your dry eyes, I have a dry eye specialist Dr. He recommends using an eye lid wash product and taking an anti-oxidant like fish oil/Omega 3. They have helped me a lot. I also humidify especially at night using a diffuser. I also add essential oils that help clear my sinuses. Avoid excess air conditioning and sitting in its or other drafts. Dust is bad for me, too.

If your eyes lids are stuck together in the morning, apply a warm, wet wash cloth to loosen.

[orange33 in reply to SusieW2]

Hi thanks for the tips. I realise now I should have should have treated this condition with more respect. Stay well and thanks.

[MichelleHarris in reply to SusieW2]

Thats interesting. I’ve said for years that a dusty room makes me feel suddenly really ill x

[Hidden]

“What is Sjögren’s?

Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas”

The most reliable source of information I have found: sjogrens.org/news/2020/sjog...

[MichelleHarris in reply to Hidden]

This is a great link thank you!

I dont seem to be able to join in the UK though 😞

[Hidden in reply to MichelleHarris]

I haven’t actually tried to join the SF but I can access most of their info and blogs anyway. I find the BSSA mags very good but they don’t have any social network presence so not very useful for awareness raising. This maybe generational and they might need some new young blood to get them into the C21st?

[harmony2 in reply to MichelleHarris]

John Hopkins Hospital has a Sjogren’s department and their website has a lot of good information, also the Mayo Clinic has good information. Do online search. Generally from the UK I can get onto the American Sjogren’s Syndrome Foundation. Worth joining and donating , if anyone can, to support them because they are working very hard to increase worldwide co-ordinated research into the disease.