Sjögren's syndrome: I’ve had a lump on my neck since... - NRAS

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Sjögren's syndrome

Rachel43 profile image
7 Replies

I’ve had a lump on my neck since April. Been seen by ENT who referred me for a neck ultrasound & biopsy. I went Friday and was seen by the radiologist. Have quite a few swollen lymph nodes as well as both parotid gland this time so he didn't do biopsy. As quite a few abnormalities. Have to wait & hear from ENT what they want to happen next but could be something called Sjögren's syndrome. I’ve never heard of it.

Any advice

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Rachel43
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7 Replies
Madmusiclover profile image
Madmusiclover

Ooh that sounds not very nice! Pop it into the search on here. It’s been mentioned a lot of times by various people.

KittyJ profile image
KittyJ

I can’t offer any advice, here’s the link to info but don’t Google until you have a diagnosis as you’ll only scare yourself 😊

nhs.uk/conditions/sjogrens-...

AgedCrone profile image
AgedCrone

Dont’t worry too much…Sjögrens Syndrome is associated with dry eyes,& mouth…in fact any areas of the body that produces fluid. At my first rheumy appointment 20+ years ago, it was suspected…but it took about 15 years to actually appear. I have it very mildly & it hasn’t complicated my initial diagnosis of Sero Positive RA.

One famous person to have it is Venus Williams the American tennis player…and look at the strenuous life she leads.

Hope you get your test results soon so that you know where you are with it.I’m sure NRAS will have some literature on it..give them a ring tomorrow & ask.

Rusticgarden profile image
Rusticgarden

I have Sjogrens, effects my eyes , nose , mouth being dry . I use mouth spray and eye drops .But my meds for Rheumatoid ( biologics) seem to have helped it alot . I had a neck lump ( front of neck towards the bottom ) which was my thyroid had it removed and my parathyroids

Lizard28 profile image
Lizard28

I’m surprised they didn’t still do the biopsy unless it showed it was just active lymph nodes and nothing to worry about. I also have Sjögrens and now lupus, Rheumy just prescribed hydroxy. I get salivax pastilles for my dry mouth and have had punctual plugs in my eyes as they are so dry. Do you have any other symptoms?

Rachel43 profile image
Rachel43 in reply toLizard28

They said as both my main salivary glands are abnormal & lymph nodes he thought it was not what they thought it was at ENT (cancer).

Now I look at symptoms I think it may have started a while back as I had an eye ulcer and was given moisture drops. Which I use daily.

Also have cracked lips at the corners on & off. Mouth dry & not eating as much. Dry skin.

I have had RA diagnosis & Raynards.

Hawkeye52 profile image
Hawkeye52

I have Sjorgens. Mostly manifests itself with a dry mouth which is very hard to manage

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