Sorry to be late in reply. I'm so glad you finally have answers...and to be honest, I'm not surprised at the answers you received. Being that I have primary Sjogren's and ganglionopathy, I could see some of your history matching mine. I too am sero-negative for Sjogren's, but very positive via lip biopsy. Actually, my lip biopsy report says that there was so much loss of acinar structures and the degree of fibrosis was significant, that they considered it consistent with Sjogren's at end stage.

I hope they still follow up with checking for Scerloderma based on your ANA nucleolar pattern. As I told you before, it is possible to have overlap of autoimmune disease processes...and the member from Sjogren's World had both along with profound neuropathy.

There are actually many people with Sjogren's that don't have overly dry mouth. My mouth isn't that dry any more. I have times when it is more dry, and times when it isn't that bad. You should see a dentist though, as dental problems are common with Sjogren's and even slight bacterial changes in the mouth (from less saliva) can cause gum disease, cavities, etc.

Your new GI symptoms (constipation, etc) may be explained by some autonomic neuropathy...also very common with Sjogren's and ganglionopathy/neuronopathy.

I know you have tried various DMARDS, like Plaquenil without success and having many side-effects. I hope they consider IVIG for your symptoms and neuropathy...you would definitely be a good candidate. I have found IVIG to help Sjogren's symptoms and some of my neuropathy symptoms. However my neuropathy and Sjogren's was confirmed too late and therefore there was too much permanent damage for significant improvement with biologics and IVIG. But I do have less pain and I think it's has helped with slowing further progression. My autonomic symptoms also seem to be better managed, which I attribute to IVIG. With your new Sjogren's Dx and history of confirmed SFN, you should not have a problem being approved for IVIG...even in your location.

Please keep us posted.

Thanks Enbloc. Yes whenever you've described your neuro experiences I feel I'm somewhere behind you with very similar symptoms. Very helpful to know that your mouth isn't usually severely dry. Like you mine goes in stages. I know my teeth are weak and I have had many fillings and have had plenty of root canal treatments and crowns.

However, some years ago I took my sons to a dentist. He looked at youngest son's teeth and said that, unlike the other two, he obviously slept with his mouth open. He explained that this has a pretty devastating impact on oral hygiene as the saliva doesn't flow overnight, leaving bacteria to do their thing unimpeded.

Ever since then I've woken, as I always do because of bladder calls and pain, and found myself clenching my mouth shut for dear life! I now have to wear a mouth guard because bruxism has made its mark, but I'm convinced that keeping my lips closed at night is one of the reasons my teeth are much improved from how they were in my younger days. I do get a very blocked, dry nose - periodically full of ulcers that trigger nose bleeds. And have had a bothersome dry cough for years. Also I'm getting these severe palpitations after eating now which I think are vagus nerve related to the act of swallowing/ chewing. So it seems to me that this must be where my Sjogren's lands. But I also think I've had it for decades and that the RA symptoms were just a manifestation of it. The neuro symptoms started well before the polyarthritis and synovial swelling.

I don't think I do have Scleroderma - or maybe a mild version (ie CREST) because I really don't have the external skin hardening apart from on my toes and one elbow- and no ulceration or calcium deposits, only mild Raynaud's and circulation madness caused by the SFN. If a nail fold capillary test is ever done then I think they will only see telangliectasias at the tops like red halos with the odd splinter haemorrhage - none in the nail folds themselves, a very reliable indicator of Scleroderma I'm told. My nails are more PsA/ Lupus-like.

Interesting about constipation. I'm convinced it is autonomic because it isn't stress related and I have no abdominal discomfort. It's as if my brain has forgotten to signal to my bowels to work - so, like a broken lift, the doors don't open often and the lift shaft is now not functioning properly either despite all the Laxido! It reminds me of a friend with MS's description of hers.

The treatments already tried - actually Plaquenil and methotrexate were brilliantly effective for me but severe allergic reactions made them impossible. I'm really hoping you are right about IViG being on the menu. I recall waiting for my lumbar puncture in the day care room of neuro ward for about six hours wedged between a couple of people having their IViG. Their symptoms were far less problematic than mine to begin with. But when I asked the neuro if this would be available for me to try too he looked startled and said no - not for RA with "mild SFN". This was a year ago.

I think it's probably too late for me now as the painful burning has gone and all is largely numbness and tingle with crawling and turning to stone sensation. But I'd still like to try it to help with the autonomic features. I will certainly ask the new rheumy. Would it have a better track record for Sjogren's neuropathy than Rituximab though?

The main drug friends with lupus and vasculitis recommend to me is Mycophenolate Mofetyl. It is a DMARD and supposedly helpful in preventing renal involvement - which I'm rather worried about given I have microscopic haematuria and a very large renal cyst and hypertension. I will let you know what is decided.

"Would it have a better track record for Sjogren's neuropathy than Rituximab though?"

Mat, obviously discuss this with your clinical team but as far as I can see Rituximab does not seem to be very effective Treatment of primary Sjogren syndrome with rituximab: a randomized trial. - PubMed - NCBI. There is a commentary on this clinical trial here Does Rituximab Help Patients With Primary Sjogren Syndrome? | Annals of Internal Medicine.

Thanks for this Kiwi - very useful to have these links prior to rheumy appointment. A UK friend on another forum was recently diagnosed with P Sjogren's and put straight onto Rituximab with Hydroxichloraquine. She isn't feeling the benefit yet and has a glandular plus RA rather than neuropathic presentation. But she's only had one infusion so far and I assumed that it is now part of the treatment protocol for primary Sjogren's in the UK. I think I'm more interested in IViG for myself.

Mat, thanks for the reply. We definitely have many, many similarities with the presentation of our symptoms, other than mine being a seropositive RA diagnosis. My grandma HAD rheumatoid arthritis (that's how she words it) more like it went into remission and she hasn't had issues in years, but she did have the active disease for many years. Genetics definitely playing a role, but I do wonder what "flipped" on the gene - environmental factors? Smoking for several years on and off? Wish I could undo those bad decisions now. Do you have any family history of autoimmune diseases?

Shockingly, the one thing I haven't done is given up gluten. I am on a ketogenic diet, I've been on it for 2 months. It's helped with the burning in my feet, however, my hands started bothering me a few weeks after starting keto and now I have tingling in my fingertips, altered sensation in the fingertips, burning in my hands, and burning in my mouth, lips, nose, and earlobes. My fingers get FREEZING cold and then when they warm up, they burn and turn bright red and that's when my fingertips tingle. I'm assuming a little Raynaud's is happening. ALL of this started with extremely cold feet (painfully cold) before the numbness kicked it. Side note, I don't eat much gluten on my keto diet, I was actually trying to avoid it, but found out it was in my salad dressing I was eating all the time.

I cheated once on keto and had pizza with friends. My entire mouth was vibrating and tingling after. Big mistake! Do you follow any certain type of diet? I've been reading these books about the immune system and how to help "recover it" with diet, supplementation, etc. It sounds a little too good to be true and I haven't read one thing about neuropathy in there unless it's presented with MS (where it seemingly comes and goes) OR a celiacs diagnosis, which I don't have. I might give the AIP diet a try, but I'd have to leave keto behind because I don't know how I could do both.

I have absolutely the worst anxiety and depression, especially lately. My anxiety was extremely bad in the two years before this all started due to a relationship ending, losing a job, etc. Do you have any issues with anxiety or depression? Do you believe those emotional issues compound any symptoms in a psychosomatic way?

Also, the link you provided me with didn't work. It went to a login page. But I'd be interested in reading it!

Have a nice rest of your weekend and thank you for allowing me to chat!

Lots of questions to answer and a poorly dog to care for just now as it's tea time here in Scotland!

Firstly to answer the anxiety and possible psychosomatic element to our neuro symptoms question, no I don't believe either of us could dream up such symptoms - only very few people would be fanciful enough. I'm firmly of the opinion that my own symptoms are important clues and I have had counselling and worked out most the origins of my autoimmunity. As a few regulars here know, last year I was in hospital quite a lot (four weeks in total).

Each time I was admitted I knew exactly what was causing my symptoms where doctors hadn't a clue and misdiagnosed drug induced pancreatitis as sepsis, and a post op sepsis on anxiety. They were pretty abject when they found my CRP up at 160 each time!

My symptoms guide my research and I now trust my instincts over medical opinion most of the time. Experience has given me confidence to be proactive and persist searching until I get proper answers.

I don't suffer from depression, although I was diagnosed and treated for this at one stage a few years ago so some doctors coming new to me as a patient, will see a short, overweight, middle aged woman and jump to conclusions. When they have done this, and backed up their assumptions with this depression diagnosis, I mince them!! Now they see the formal letter of complaint I copied onto my notes and realise I'm not for messing with! My old GPs on the island where I lived (and still return to for long periods) learned the hard way not to blame anything on anxiety with me!

So please don't let yourself become anxious that your symptoms are a figment of anxiety and aren't real. Equally don't panic that they are something terrible. You are articulate and clearly sensible so you need to trust yourself to know when things aren't right. I've not met you of course but I wonder if your RA and perhaps OA are probably not well controlled and this is causing your neuro symptoms. This is what I assumed was happening to me when my neuropathy progressed but now I know that my RA was secondary to this primary Sjogrens. Perhaps it is the other way round with you? And as Kiwi has pointed out, Musculoskelital diseases can have an autoimmune element - it really is not black and white in rheumatology at all - we are talking about a huge spectrum.

I dont know the significance but I have read that the spondyloarthritis family of diseases are considered to be immune mediated now, rather than autoimmune. A form of spondy, Psoriatic Arthritis most certainly causes peripheral neuropathy as one of the main symptoms - and can overlap with RA. Is this a possibility for you I wonder? PsA can affect some people without the psoriasis being present. My cousin has this type but her family on the other side are the ones with the history of psoriasis.

I don't know about my own family history of autoimmunity I'm afraid. My mum had many things wrong with her but rarely bothered to see a doctor and died suddenly at 73 from sudden cardiac arrest caused by severe atherosclerosis, despite being thin and physically active. My dad also died of cardiac arrest while swimming in the sea. He had heart problems, hypertension, diabetes and gout. I think his diabetes was a rare, late onset autoimmune type but unfortunately I never got to ask him more. My grandparents all died quite young from a car accident, septicaemia and this rare diabetes respectively.

My sisters were both born profoundly deaf and one has burning mouth syndrome which I suspect might be Sjogrens. She has awful back problems too. But her bloods were clear (apart from raised ESR) and she didn't want the lip biopsy she was offered a few years ago. I will write and tell her my Sjogrens news. We have a second cousin with primary Sjogrens who ignores it as best she can but she's getting on and the arthritis side of things was much worse when I last saw her a few years ago.

I have found that researching and understanding why I feel things physically and emotionally is the best way to stay relatively up beat. For instance, my depressive phase was out of character and so I got myself tested for vitamin D levels and found I was deficient. So I now take AdCal D3 and have never looked back. If I'm anxious it's because my symptoms make me anxious - not the other way around.

I'm lucky to have a terrier soul in me and won't allow people to obstruct my quest for knowledge. No one has used the word psychosomatic or functional or dismissed me and not lived to regret it - I'm an artist but I've inherited a good legalalistic mind and don't suffer from brain fog. Foods don't influence my symptoms at all apart from bread and sugar which make the weight pile on.

Very windy here in Scotland today. Going for a late afternoon nap now! Take care.

I get what you are saying about the scleroderma and only having very minor signs on the toes and one elbow. But this is why it is very important to be thoroughly checked NOW. If it is in very early stages, then this is when it needs to be caught and treated for best outcome. Those who don't get Dx'd until all the fingers and toes are effected are well into the course and outcomes aren't always as good since it wasn't caught in early stages.

Whenever you have confirmation of an AI disease, then it is crucial to double check symptoms that may related to other AI disease, as 'overlap' is common and changes the treatment factors. I have overlap to include Sjogren's with ganglionopathy/neuronopathy, APS, and now Psoriatic Arthritis...ALL autoimmune based. And you are correct...spondyloarthopathies ARE immune based. I just saw my neuro/rheumy at Hopkins this past week and we discussed the confirmation of my new inflammatory arthritis (PsA) in this class. Once you have an AI disease, it is very common to add others on.

I don't have any experience with Rituximab, but several on the Sjogren's board have tried it, some with success in reducing symptoms. IVIG is far better (and documented) for neuropathy from Sjogren's...but needs to be caught early, as in any condition, for best results.

I would agree with you (just in reading your posts) that you have NO psychosomatic elements to your symptoms!!

As for the constipation...autonomic neuropathy is NOT the only factor here. Just because you don't have severe dry mouth, doesn't mean you don't have 'dryness' elsewhere. Moisture producing glands are throughout the body and Sjogren's effects EVERYTHING with moisture (which is pretty much everywhere). Joint fluid, skin, GI track (entire), eyes, mouth, vaginal, vascular, etc, etc, etc...the list goes on. So your constipation is likely a combination from autonomic neuropathy and Sjogren's...which causes changes in stool due to lack of moisture. Miralax (not sure if you have this in Scotland) works by pulling moisture from the colon to aid in constipation.

You will likely need to add a few specialist to your medical team as Sjogren's effects so many things that are beyond PCP care.

Needless to say, a cardio might be wise as well, to evaluate the palpitations. Autonomic neuropathy effects cardiac function as well...in many ways.