As you said, your rheumy (and your area) doesn't seem to have the expertise on Sjogren's, and this may be clearly evident by his comment that SFN doesn't progress in those with Sjogren's (very wrong). Was this the old doctor that just retired? I doubt he is up on the latest with Sjogren's.

I'm hoping your large teaching hospital offers you more options and opinions.

There are numerous articles (that have been posted on this board as well as Sjogren's World) that document the neuro complications (including SFN) of Sjogren's. There is NO mention of non-progression or that it will cause certain amount of damage then no more and patients just have to live with it. Sorry but that just blows my mind. But I feel confident you will get other opinions from your new rheumy and the team at this teaching hospital.

Well he is retiring but to his credit he was the fourth rheumy I've seen and the one to rediagnose me with primary Sjogren's and for that I'm very grateful. The problem is that he and his UK colleagues may not be gemmed up as I am having been able to research using reputable sites and speaking to people like yourself. Whereas they may not be reading up on Sjogren's because they are too busy with patients with other diseases?

I only had my brain MRI yesterday but plan to phone up the hospital and see if I can extract at least some of my results tomorrow. If my white matter has progressed beyond what is deemed as normal, then I'm not going to argue about trying Rituximab if I'm offered it. Otherwise I will see what the very dismissive ("you look too well to have a multisystem disease!") neurologist says in a month's time. I do wish the goal posts didn't keep changing.

Oh, I agree! At least he had to knowledge to order the lip biopsy and that gave you the Dx.

Doctors can chose to follow new research or not. Many don't have time and focus their studies on what they do know (like other more common diseases). Just don't let the lack of knowledge (from the doctor) send you in a direction that is incorrect. You can take your research (print your sites/articles) and show them to your doctor. Some doctors don't like patients to do this, but I'm of the mind that I'd rather have a doctor that is willing to learn what they don't know vs one that works off outdated or lack of information.

I'd love to read any article you've found on SVID from Sjogren's being treated with Rituximab. I'm always interested in treatment info on Sjogren's...especially since I have SVID.

Never hurts to try to get results...give them a call. I have gotten results by requesting the CD of the MRI (in the US, they commonly give CD copies for patients to take to other physicians)...they usually stick a copy of the written report/results in with the CD. Then I can read results before doctor calls and I'm also prepared with questions (since I've already seen the report). The worst they can say is NO.

Wow that's amazing re the CD! In UK many of us can't even access our blood test results in print form or get copies of consultant's letters. It's so paternalistic. My friend is getting up at dawn tomorrow to launch a tantrum upon our GP practice manager (primary care) because they sent her a text refusing to give her one of her repeat prescriptions and then lied, saying they had sent her a letter and a form to complete, when they had not. She has Addison's and Sjogren's (weird coincidence as she's my new friend here and we met through mutual friends who were unaware of our common health problems) with SFN in her toes. She was a head teacher until she was retired early on ill health grounds and she has offered to come with me to my neuro appointment next month. I do all the research into our shared condition and symptoms and she does the head teacher thing - quite a mutually beneficial arrangement really?!

I did give my neurologist the Birnbaum/ John Hopkins article about neuro Sjogren's back in March. She waved her hand disparagingly at me and said "yes yes we have other patients with Sjogren's - I know about this.." But I notice she handed everything else back to me telling me I was over thinking everything - but kept your rheumy's article?

This is old research from the BMJ from 2003, so no mention of Rituximab, but a good bit at the end about immunesuppression for SVID of Sjogren's - and for me an interesting mention of paired oligloclonal bands in CSF being an indicator of CNS involvement in SS. Central nervous system involvement in Sjogren’s syndrome -- Soliotis et al. 63 (6): 616 -- Annals of the Rheumatic Diseases

Thanks for the link.

I don't see SVID mentioned. Your MRI was dismissed, if I remember correctly as being non-specific. Do you have the actual report from the MRI? If so ,what does it say? I went back to posts from long ago and you reported that it only showed SVID that matches your age and stage...no lesions. But I don't know if this was what the doctor had told you then (and we all know how they like to minimize findings at times) and now you have seen the report and know more.

But honestly as I said before to help put your mind at ease a bit, SVID doesn't have many symptoms reported, except dementia/memory/etc in significant cases of SVID. It doesn't create a major CNS condition. I interpreted that article to be more about other, more serious, CNS conditions. And although they use immunosuppresion for serious CNS involvement, Rituximab is not in this class, per se. Rituxan is a biologic agent for monoclonal treatment, to target B cells...it is not a general immuno-suppressor like Imuran, Cellcept, Cytoxan, etc. And I just read an article from our National Institute of Health on Rituximab for CNS of primary Sjogren's and it was didn't have great results (Rituximab in central nervous system manifestations of patients with primary Sjogren's syndrome: results from the AIR registry. - PubMed - NCBI)

I would just wait and see what the MRI finds and see what the neurologist has to say (not that you were very impressed with her dismissal of your condition)...maybe ask for a second neuro opinion if you are permitted that in your system.

But don't jump with the Rituximab until they can tell you what symptom(s) it will improve (and you find something confirming this online). Because your vertigo is obviously from something else (Sjogren's related for sure, but not SVID), and this is the most debilitating symptom for you, if I'm not mistaken.

I so wish you can get hooked up with someone that has more experience with Sjogren's. Maybe the new rheumy (to replace the retired one) will have more knowledge on this subject...let's think positive that he/she will and help get you the treatment you need. Do you even have a follow up appt for a new rheumy?

Thanks for giving me your thoughts. You are right the SVID was non specific in the previous neurologist's report - it literally just said "small vessel disease in keeping with her age". Because it was from a different hospital the rheumy had to search it out during my appointment. He found it and wrote that Sjogren's would certainly account for SVID of this kind and commissioned a second MRI for me, 18 months later. I think it might be easier if I just started another post with the contents of the letter because you are much more sharp than me and will understand the implications better if you can read what he's actually saying. He told me he thought that my version of Sjogren's might be affecting my CNS.

I assume this was because of the disequilibrium I reported as my worst symptom presently - because he referred to this in his letter. He saw for himself that I struggled locating my chair following the examination. But he's a rheumy not a neurologist and he probably isn't qualified to assess this properly so he addresses the neurologist in the clinical letter. I didn't get sent a copy of this letter, my gp printed it off for me. So I'm just interpreting it for myself now in lieu of any other information.

I did phone the hospital for results but he's on annual leave until Monday so the CT report is on his desk - MRI not through yet. The secretary agreed that I can feel reassured that if anything suggesting lymphoma had flagged up in the CT report I'd probably know by now as the radiologist would have alerted one of his colleagues. So good news in this regard at least! My next rheumy appointment is booked for end of November but they can expedite it if there's anything urgent to be discussed. I asked about a replacement but she wouldn't comment. Rheumatologists are like gold dust in the UK so he won't be easy to replace.

Enbloc - here is the letter for your perusal if you would be so kind. Personally I would rather be allowed to try Cellcept/ Mycophenolate at this stage. Followed by the option of IViG - which has never been mentioned to me once by rheumatology or neurology.

"Labial gland biopsy fulfilled Cheson's criteria for Sjogren's Syndrome and overall I think this is a likely explanation of her symptoms. She has a long history of dryness (eyes,mouth and vaginal) for which she uses symptomatic treatment. She has also recently developed constipation which, although I would not associate with SJS, again maybe explained by reduced exocrine secretions. She complained of night sweats but her main symptoms are her presumed small fibre neuropathy and also her "disequilibrium".

"Opinion and Management"
"I would think we now have a firm diagnosis of primary SS. The likely major organ manifestation is neurological. I note she sees Dr (neuro) and has an appointment to go back in mid October. I note her MRI in (previous hospital) early 2015 showed some non-specific white matter changes consistent with small vessel disease. SVD is certainly something one might see in primary SS. I have requested an MRI and in view of her night sweats, CT of chest abdomen and pelvis. I think in terms of her neurology the 2 main questions are (1) does Dr (neuro in same new hospital) agree that what we at seeing is consistent with primary Sjogrens Syndrome and (2) is there currently active/ progress neurological disease. If the answer to both of these is positive then we should be considering further attempt at immunosuppression, perhaps with Rituximab"

"Follow up - 3 months"

"PS Dear (neuro), please see my questions above. I would be grateful if I could have your opinion regarding these. KR (rheumy)"

I'm sorry if this was already discussed. Did you have a full autonomic work up?
Tilt table, halter monitor, sweat test? So many of your symptoms seem like autonomic dysfunction. If you have the sfn symptoms, it could very well be dysautonomia causing the organ malfunctions and disequilibrium. It can cause distortions in vision, dryness in secretions, vertigo, among a hundred other issues. I am also back and fourth between a borderline SJS diagnosis vs another random connective tissue/neurological disease. I have some doctors say they think its autoimmune SJS and some say no, it is the autonomic damage causing the SJS symptoms of dry eyes.
Do you have a history of autoimmunity in your family?

Hi Healthgirl. No I've never had an autonomic work up. Not sure if they even do these where I am in Scotland. My SJS is now primary and definitive.

My family weren't a healthy lot although they tried by eating very well - and no history of autoimmunity that I'm aware of - but most died young from stuff like septicaemia, car crash, heart failure and hereditary, late-onset diabetes (type?) so I can't know this for sure now.

I'm fairly certain that my primary SJS and other autoimmunity were caused by my late mum starving me accidentally as a newborn. Her breast milk never came through properly because my grandmother told her not to feed me more often than 4 hourly. By the time a visiting nurse friend saw me I was a day off death from malnutrition, or so the reluctant story goes. Rather than telling any doctor, they took this nurse friend's advice and bulk fed me on semolina mixed with formula milk. I can only have been a month old at most. My Nan called me "Miss Semolina" but I only found out why once I'd prised this information out of my mum, who was so ashamed.

Consequently I was told and believed, until I was in my 40s, that my many facial rashes, GERD, intermittent constipation, sweats, fatigue and severe alopecia and chronic eczema were all a consequence of stress/ anxiety.

Lots of things have made sense to me recently but none of this is on my medical records... Yet!