Can all this be due to Sjögren’s?

Thanks Christine. It’s frustrating to me knowing that just over the road is an MS centre of excellence for sufferers, operated by the charity hand university - offering therapies and support. Whereas the group meetings I’ve attended in a place quite far away for me - are just made up of older women who have more classic SS and just want to talk about related products. They don’t seem to have the MS version like me. Nor even the RA version.

I’m newly off a drug called Cellcept in case it was causing the tremors and worsening of small fibre neuropathy. My BP has been swinging from very high to low like a giant pendulum and I’m newly on a beta blocker plus my BP meds. The dizziness and vertigo have eased a bit with the anti dizzy drug so maybe/hopefully things will start to ease up. I just wanted to know if others here get a sort of Parkinsonism with their Sjögren’s (this is how it was described to me by a neurology nurse). 

Wow Megheart - this is some reply - thank-you! M

Firstly - yes the index (wedding ring) finger doesn’t fully dislocate as you describe but it’s definitely unstable in the PIP joint. At first I assumed it was the RA coming back but there’s no swelling. I’m under an occupational therapist who gave me putty to exercise n hands for improved grip as they are now skinny and feeble. He connected that this finger joint was unstable and I should be a bit careful to not over exercise it. I must say it only really bothers me at night because it catches on the duvet. I’m thinking it’s to do with hypermobility perhaps but will ask my rheum when I see her in April. I assume this because I do Pilates and the instructor connected that  I’m very hypermobile everywhere in a way that suggested i would know. She’s a physiotherapist by training so it sort of lodged in my mind and I’ve been vaguely researching my family history which tarries - my late mum had a stretchy intestine which knitted with many kinks and stretchy velvet skin like me. 

My internal tremors (mainly noticeable at rest) have taken me in some very odd and interesting directions over the years. And I have been pretty ill since January with a cold virus that turned into cough and sinus thing and then this grand tremor with mini seizures when I rest. But, like you, I’ve had intermittent tremors (I didn’t even realise these were tremors until very recently) in my arms and bizarrely - in one toe. I even phoned a neuro nurse at the Brain and Spine Foundation last week in desperation. She felt all was related to small fibre and autonomic neuropathy and exacerbated by the virus. My Plasma Viscocity was 2.00 last month - which I’m told by rheum is just Sjögren’s hyperviscocity. But for me I know it’s a bit more than that because mine usually sits at around 1.91 (normal range 1-1.72) so this is pretty high.

And also, apart from a horrible dry cough and worsening Sicca - I don’t feel ill in the viral or infection sense at all - no nasties from nose or chest, no obvious heart problems, sinusitis, raised temperature etc. Just a worsening of my usual poor balance, extremes in BP (currently on beta blocker and my usual Losartan) and feeling of being even more off kilter than ever before. Vestibular plus neuro stuff I’m guessing? 

I'm hypermobile, comes from Dad's side where people only ever die of old age or heart disease, neither of which I have, tho I have outlived age of death for mom & 2 of her sibs.

It’s in all the literature as a common autoimmune disease - the second most common - which I agree doesn’t make it common - but compared to others such as Scleroderma it’s common I suppose. I’m a woman so I’m applying the stats given out to myself as a majority share holder lol!!

The point is that there’s no reason why Sjögren’s should be a little known “Cinderella” disease compared to RA or Lupus or why Venus Williams’ (apparently a sufferer) achievements should be held against those who have it much more severely. A person with one smal basal cell carcinoma could legitimately tell people they have cancer but it wouldn’t be the same entity as it is for a person with breast or prostate or pancreatic cancer. There are degrees of most diseases and I feel the mild Sjögren’s is the only type that most know about, if they have even heard of it. 

Is it Rheumatoid Arthritis (RA), Psoriasis or Diabetes which is number one on the Autoimmune Disease list?

Regardless of which it is, each of these three mentioned are more well known than Sjögren's Syndrome. Why is that? If SS is supposed to be the second most common what is the impediment to more people knowing about it? The 'foreign' sounding name? (Is it any more difficult that Psoriasis or Psoriatic Arthritis). Is it the seemingly innoculous disease course? Is it that more women are affected than men?

Medicos in general are almost as ignorant as the general populace in their understanding, if not their awareness, of S.S. considering it's reputed prevalence.

Your analogy re. the BCC as legitimately being cancer as compared to pancreatic cancer is a good one. There are wide divergences in disease expression in each person.

I don't know if I have mentioned this before but once per year I am called in to be an 'interesting case' to doctors who are doing their physicians exams before diverging their practice into various medical specialties. When it comes to the Sjögren's part for me I spare nothing. I lay it on think that Sjögren's Syndrome for me did not start with dry eye and dry mouth but with diverse manifestations of autonomic neuropathy. Ok the dry eye and dry mouth may have been there but for me at that time they were minor players.

It's necessary that this next generation of doctors know that like other conditions, S.S. people can manifest severity right across a spectrum and they need to understand what that spectrum consists of. 

So that is a small part that I am playing in my neck of the woods towards helping doctors confront the sometimes devastating effects that S.S can inflict.

This year I will be able to add a couple more things to the list - hehe.

You are a fabulous SS ambassador Megheart! I think I’m okay too because none of those who have had me as a patient ever say “but Sjögren’s is just dry eyes and mouth!”

Rather their eyes narrow and they speak of my condition. They are definitely more at ease with speaking about RA! But also I think the problem lies, in the UK anyway, with the older generation being the most vocal spokespeople for Sjögren’s - particularly women. So it’s image goes with older women with dry eyes and other parts and this means younger women and men are often misdiagnosed with ME or Fibromyalgia and Sjögren’s isn’t even on the medical profession’s radar for them. 

The other big problem is that, although lip biopsy is one of the gold standard definitive tests - it’s increasingly hard for rheumatologists to persuade dental surgeons or ENTs to perform it. I think this may be owing to the fact that those who get positive diagnosis this way are still usually ignored or treated as Cinderella’s. We aren’t included in any of the large clinical trials or data that is used in information. So this data is entirely skewed towards Ro/ SSA positive sufferers and therefore gives a very unrepresentative overview of the systemic burden Sjögren’s places on societies everywhere. That’s my view anyhow but I guess you, i and others need to keep workung hard to change the image of Sjögren’s.

And yes the business of not being able to pronounce it is ludicrous I agree?!! X

Ps sorry for typos - combo of bad nights and numb fingertips not good!!

Oh thanks so much for your reply - it’s good to hear from someone with my version of Sjögren’s. 

I wonder if you get your kidney function tested often? I ask because I’ve just come off an immunsuppresant used mostly for those who have had a  kidney transplant or who have kidney involvement in diseases such as Lupus. 

I was on a blood pressure forum recently while asked to check my own by my GP. I couldn’t work out the pendulum swings of 166/116 to 76/45. I noticed that someone had posted saying that doctors don’t tell us that an eGFR (estimated kidney filtration rate) of gt60 means we have CKD stage 2. I was nonplussed because this is me! 

Then I recollected a friend who was diagnosed with epilepsy by a neurologist but finally discovered that one of her kidneys had failed. 

I know I have a very large irregular cyst on one kidney and for 2 years I had blood in my pee but it’s gone since I was put on the higher dose of Mycophenolate by my rheum. Now she’s taken me off it and my BP is swinging about even more. So inevitably I’m thinking that rather than essential hypertension  I may have CKD causing the tremors and orthostatic swings etc.

But if yours is related to the neurological side of things I’ll just bide my time and see what next lot of blood tests show - if anything. 

I get my kidney function tested ever y 4-6 weeks because I have something which sends me to the doctor.

Me too. Do you get copies? Mine says eGFR gt 60 and they tell me this is fine. But my NHS dietician said it is in fact stage 2 CKD. When I asked my GP she didn’t dispute this and yet it’s not listed on my rheumatology notes? I have been doing my research because my mother in law has CKD stage 5 and is shortly to start dialysis. CKD often causes neurological symptoms so I’m guessing there’s a link with Sjögren’s and Lupus here? 

You know you have really made me think and I have to check because I do have a cyst on one of my kidneys and have had issues with all that you described but never put it together.

Oh well I’m a great one for adding up two and two! I had to fight so hard to get rediagnosed with Sjögren’s as my main disease a few years ago. Every doctor kept telling me it was just secondary and there were no treatments and saying my ENA panel was negative etc.

But my RA was non erosive and had all but disappeared whereas my rashes and Sicca and much more importantly - my neuropathy -was only getting worse once off all DMARDs. 

The thing is that when you’ve had to fight hard to be diagnosed with the right condition you learn to trust your instincts about what your body is telling you. And mine is telling me there is something very wrong because it isn’t working properly - doesn’t fit - is trembling and shaking with no signs of infection or other viral unwellness.

The extra neuro/ vascular stuff can’t all be anxiety or heightened health awareness as my neurologist wrote in her clinical letter to my GP. I’ve had experienced that make my present existence feel like a paradise of calm and wellbeing and never had tremors or orthostatic hypotension, vertigo or dizziness?! I mean how would I not be aware of this and 3 years of numb tingly increasingly expressionless face and inability to stand without a stick seat to perch on?! And none of this would cause a continually high PV/ ESR - last month at 2.00 (normal 1.05-1.72). CRP always and Creatinine usually raised too. 

I’m just not fanciful or somatic enough to imagine such stuff and also my hunches have invariably proved right - from pancreatitis and post op sepsis to Sjögren’s rather than RA. 

So I think our kidney cysts might be bigger culprits than these specialists are acknowledging. 

Agreed. Thank you so much for sharing.