Hello. Well it seems I've tested positive at last for Primary Sjogrens! This is the definitive result from my lip biopsy where high numbers of lymphocytes were found in my four salivary glands. This is surprising because I don't have the oral dryness or severe Sicca usually associated. My Sicca is reasonably mild although it has been bad periodically - but manageable. My ANA points more to Scleroderma apparently, so I have no idea what the new rheumatologist will say when I finally get to meet him on 24th of this month. He must have suspected that my SFN indicated Primary Sjogren's because it was he who instigated the lip biopsy and parotid ultrasound.

My main symptoms continue to be the non length dependent SFN and ensuing proprioception issues. But I also have gynae problems, strange constipation and horrible palpitations after chewy, or dry food or icy drinks. Plus very nasty tasting mouth and salty saliva - not confirmed by any oral dryness or parotid issues according to ultrasound yesterday. All a bit baffling but I'm really hoping that this diagnosis will at last allow me to try further treatments that modify/ slow down the small fibre polyneuropathy - which I've long been convinced is part of an inflammatory process.

Meanwhile I wanted to add that I'm so grateful for the support I've had from this forum over the years. I have learned so much from you all.

I feel funny congratulating on being diagnosed with a disorder, but we all know that really can be a good thing! Hope they can treat you properly and that you get relief from the SFN.

Thanks so much Janieg. I know it's sad but I skipped out of the dental hospital yesterday (or as near to skipping as numb feet and dizziness would allow!). I think congratulations are well in order - bizarre as many non sufferers would find this!

Mat,

That is great news that you have a diagnosis. I know how frustrating it is not to know.

Is there any way you are in ketosis from a low carb diet? That can cause a nasty taste in your mouth. I am keto adapted and my mouth and breath smells/tastes like acetone (nail polish remover) it's the worst!

Mat, having a firm diagnosis sounds like a big step forward to me.

I hope that your care team can work with you on that from here.

No I'm on a pretty healthy balanced diet including carbs. I think mine must be either part of the neuropathy - which does affect my mouth - or bruxism for which I use a night guard but still... Perhaps this grinding is the cause? Or GORD related perhaps? My hubby and sons assure me I don't have smelly breath but it really is a distressing and very longstanding symptom. It really affects my relationship with food I must say. It's like a sour milk, rotten meat sort of taste - the relief comes with salty tasting saliva I dredge from my throat. Or sugar free gum/ boiled sweets. Ugh!

Yay - I know it's great to have a name to blame at last! So grateful to you Kiwi you've been a great source of information and sound advice I must say.

Oh, okay. I was just reading up on Sjorgen's - don't know a lot about it, but I know it goes hand in hand with RA (a diagnosis I have) so I guess I should familiarize myself with it.

Do you mind me asking how your neuropathy started and what your progression has been like? Mine started with numb toes, then progressed to burning, stinging feet. Now my hands are burning and losing feeling and sometimes my lips, mouth, and other areas of my body burn. At first I thought it was blood sugar related, then I was diagnosed with RA, and now I'm assuming the neuropathy is autoimmune mediated. Just curious as to what your journey has been like.

Hi. Well I don't know how aggressive/ erosive your RA is, but my rheumy was clear that, unless it is seropositive, it would not be the cause of neuropathy? So mine is seronegative, non erosive RA.

And it is important to understand that secondary Sjogren's is a very mild version of the disease, accompanying a primary disease such as Lupus, RA or Scleroderma, which also would not cause neuropathy, just the nuisance extras of sicca and dry mouth.

Primary Sjogrens is a proper systemic connective tissue disease in its own right, same as Lupus - and can cause neuropathy. So in my case I think my more unusual presentation has features of RA and Vasculitis and an ANA pattern relating to Scleroderma - and the latter two CT diseases can both cause neuropathy and other neuro features, unlike RA.

So, unless the erosive damage of a seropositive RA has led to you having a rare type of rheumatoid Vasculitis (usually only after having longstanding and active disease of about 20 years duration) you would maybe need to find out if you actually have Sjogrens as your primary disease, with RA features. Hope this helps.

--associated with some form of the anti-nuclear antibody (ANA), as well as other antibodies, and rheumatoid factor, can have neuropathy as a secondary component.

Sjogren's in particular is known for this, and for sometimes having central nervous system (CNS) effects as well. Often, in SJogren's, the cell bodies in the dorsal root ganglia are attacked, leading to what is more properly called a Neuronopathy, which may not be length-dependent, and can involve many parts of the body, not just the extremities.

See:

Sensory Neuronopathies

Immune Neuropathies: Axonal