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.

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

MAT - Wow, that is probably the most helpful thing I've heard yet during my months and months of trying to figure out what is happening to me. I am so sorry that I hijacked your thread here, that was not my intent, I am just so desperate to figure things out. My primary doctor, neurologist, and rheumatologist COMBINED have not been as helpful as your response once.

I truly hope you don't mind me going into a bit more detail about my situation. You're the first person I've seen here with a RA diagnosis, granted seronegative, but you still have shed so much light on this for me. I can't thank you enough.

I am seropositive RA - rheumatoid factor high, anti-ccp positive. Negative ANA, negative everything else. And I mean everything, not a single positive IgA, IgG, nothing. Vasculitis negative, ALL extractable nuclear antigen antibody tests negative, including the ones for sjorgens, etc. The only thing I have tying me to my RA diagnosis is the RF and the Anti-CCP, which are both good indicators of RA, oh and right, my horrible migrating joint pain that I've had for 3 years now.

That all said, the only other health issues I have are that I was extremely anemic for a long time (iron deficient) and I have high blood pressure - both have improved with medication and supplementation. I am also overweight, but am now down 100 pounds. The neuropathy is an absolute mystery to me AND to all of my doctors. My rheumy said she doesn't see peripheral neuropathy with RA patients. That really confused me. I'm not diabetic, but I am borderline PRE diabetic. I did take a PPI for heartburn for 3 straight years (not on it anymore since changing my diet) I can't help but wonder if my PN is stemming from poor nutrition and lack of absorbing nutrients for so long? Maybe a gluten sensitivity (tested negative for celiac)

Anyway, did NOT mean to hijack this thread from you, you're just so knowledgable and you really helped me to understand. I could not get a straight answer on how PN and RA were connected and now I'm not entirely sure they are. I wouldn't be super surprised to see a positive ANA someday, I just didn't know neuropathy would proceed that and be the first thing to go south. It's annoying to not know what is causing it because I'm just getting worse and I feel like I can't do anything about it.

Thank you again for your insight. Means a lot.

Yes thanks very much glenntaj - so helpful to learn more - have saved the two links for future reference.

Its so great to have an answer! MAT I'm truly jealous. Not to steal your post but a PET/CT found old calcified nodes which my neuro and a pulmonolgist said were highly suspicious for old sarcoidosis. Im wondering if that was the trigger for all of my nasty cranial and nerve stuff I have going on. Best of luck, prayers answered, now you can forge on with peace of mind. And I am just the opposite of you - low c3 and c4 complements!
L

Believe me MAT, i know low serum complements are weighty and I PRAY for positive lupus tests just to have an answer, thats sad.

I have so many central nervous symptoms and oligoclonal bands in my csf which show inflammation/immune activation there - ironically Sjogrens (and sarcoid) are two of the neuro presentations that can cause this as well as CIDP which I also have.