[MAT52]

As some here know, I have Sjogren's Disease. I've been wondering if itchy fingertips, itchy scalp and Sicca syndrome in eyes and mouth, pain and pressure in gums, teeth and lips could all be neurological? I'm starting to think that SS might be a neurological disease - at least for me.

I have dry eyes but they aren't gritty or sticky or pink in the way many describe - just tight. I have a horrible soreness in my gums and lips but no sign of thrush or cavities or gum disease. I have a horrible taste but no sign of acid reflux or sinus problems. And now I have this awful pain and stiffness in knuckles overnight everynight and then pins and needles and horribly itchy finger tips during days - but little clue as to skin condition causing the itch and stinging on the very tips of my fingers. I do have longstanding crawling and tingling in my feet and legs and face and a very itchy scalp but I don't get the shooting pains anymore as I used to. I'm sure all this is Sjogren's related but I don't understand how it comes about through the systemic dryness. The trigger for flares in SFN for me is heat i.e. Hot shower and cold. Mainly this affects my toes and feet but increasingly it is my hands that are most bothersome.

I suppose I'm asking this question here to prepare myself mentally for the neurologist who disparaged me six months ago. I have no CNS involvement and a recent MRI of brain showed that my small vessel disease hasn't progressed at all in 18 months - thankfully! What should I emphasise to her if I feel that all my symptoms are neuropathic rather than glandular?

[DavidHC]

I'm not sure what you should say, but I can tell you that I have every single one of the symptoms you describe, not all at once, but at various times I have had or still do have them. And as of now, I have not been diagnosed with anything but SFN. No evidence of Sjogren's or anything else. I hope that's somewhat useful.

Originally Posted by MAT52

As some here know, I have Sjogren's Disease. I've been wondering if itchy fingertips, itchy scalp and Sicca syndrome in eyes and mouth, pain and pressure in gums, teeth and lips could all be neurological? I'm starting to think that SS might be a neurological disease - at least for me.

I have dry eyes but they aren't gritty or sticky or pink in the way many describe - just tight. I have a horrible soreness in my gums and lips but no sign of thrush or cavities or gum disease. I have a horrible taste but no sign of acid reflux or sinus problems. And now I have this awful pain and stiffness in knuckles overnight everynight and then pins and needles and horribly itchy finger tips during days - but little clue as to skin condition causing the itch and stinging on the very tips of my fingers. I do have longstanding crawling and tingling in my feet and legs and face and a very itchy scalp but I don't get the shooting pains anymore as I used to. I'm sure all this is Sjogren's related but I don't understand how it comes about through the systemic dryness. The trigger for flares in SFN for me is heat i.e. Hot shower and cold. Mainly this affects my toes and feet but increasingly it is my hands that are most bothersome.

I suppose I'm asking this question here to prepare myself mentally for the neurologist who disparaged me six months ago. I have no CNS involvement and a recent MRI of brain showed that my small vessel disease hasn't progressed at all in 18 months - thankfully! What should I emphasise to her if I feel that all my symptoms are neuropathic rather than glandular?

[MAT52]

Originally Posted by DavidHC

I'm not sure what you should say, but I can tell you that I have every single one of the symptoms you describe, not all at once, but at various times I have had or still do have them. And as of now, I have not been diagnosed with anything but SFN. No evidence of Sjogren's or anything else. I hope that's somewhat useful.

DavidHC I remember following your posts a while ago and I'm sure you had a very elevated ESR? I wanted to tell you that this could be a very good indicator of Sjogren's if I'm right in what I've remembered. People with SS often have high inflammatory markers because of the systemic dehydration which causes blood to be thicker and higher in protein.

I also should say that I was only officially rediagnosed by a new rheum in a new hospital about five weeks ago. This was because he saw my high PV/ ESR and raised CRP and IgG and found that, once off all RA medications fully - my ANA had turned positive at last. So he asked me to have a lip biopsy and this turned up rude positive for each gland removed. Only in January of this year another rheum said I did not have a CT disease of any sort. End of.

So please never give up until you get proper abusers - in fact it may help you just to diagnose yourself with Sjogren's on the strength of your symptoms and high ESR (if I've remembered this correctly - if not then apologies). There are no treatments anyway apart from symptomatic ones - unless you get extraglandular symptoms or another CT disease or organ involvement.

I know quite a lot of people who have self diagnosed with a connective tissue disease because they have completely negative bloods. And when I read their symptoms I can't believe that they haven't been diagnosed and treated just on good faith. It seems there's a post code lottery regarding how Sjogren's is recognised and treated the world over. The UK. Is certainly not good for SS sufferers even if they are seropositive or meet the criteria for this disease as I do

[en bloc]

It appears obvious that you have neurological manifestations of Sjogren's...but that doesn't mean the disease itself is neurological, in the way you state. Sjogren's is a rheumatic disease...but it has neurological complications in many people (like you).

Pruritus is profound itching and can be neurologic. Neuropathy (particularly SFN) can cause intense itching that cannot be relieved from scratching (as the source seems much deeper that the surface of the skin). I have this complication when the neuropathy flares...and it involves my entire body, especially legs. I literally can't get relief and just wait it out (it eventually wears off).

I'm glad to hear your MRI can back negative. Your new Dx of Sjogren's and ongoing neurological symptoms should open this neuro's eyes. At the very least, you should request the repeat skin biopsy...since yours was not done properly. They also need to make sure the biopsy includes morphology...as it is classic for Sjogren's to damage the actual fibers...even when the density can be within normal limits. Damage fibers would explain the very symptoms your describe body wide.

Will you be seeing a new rheumatologist anytime soon? What did the CT show? Hopefully it was all clear, as well.

Did you see my PM from the other day?

[MAT52]

Originally Posted by en bloc

It appears obvious that you have neurological manifestations of Sjogren's...but that doesn't mean the disease itself is neurological, in the way you state. Sjogren's is a rheumatic disease...but it has neurological complications in many people (like you).

Pruritus is profound itching and can be neurologic. Neuropathy (particularly SFN) can cause intense itching that cannot be relieved from scratching (as the source seems much deeper that the surface of the skin). I have this complication when the neuropathy flares...and it involves my entire body, especially legs. I literally can't get relief and just wait it out (it eventually wears off).

I'm glad to hear your MRI can back negative. Your new Dx of Sjogren's and ongoing neurological symptoms should open this neuro's eyes. At the very least, you should request the repeat skin biopsy...since yours was not done properly. They also need to make sure the biopsy includes morphology...as it is classic for Sjogren's to damage the actual fibers...even when the density can be within normal limits. Damage fibers would explain the very symptoms your describe body wide.

Will you be seeing a new rheumatologist anytime soon? What did the CT show? Hopefully it was all clear, as well.

Did you see my PM from the other day?

Thanks for answering so well as per usual Enbloc. I got a letter from a colleague of my rheumy, on his behalf, saying that my SVID hadn't changed since last time 18 months ago and she found this reassuring. This was my main worry because of the vascular dementia that affected both my parents in the run up to their sudden and untimely deaths.

I hadn't heard anything about the CT so I phoned the rheumy secretary - who phoned me back late on Friday to apologise. It seems that my rheumy has gone part time in the run up to his imminent retirement and he thought his colleague had written about both test results and she thought he'd dealt with me himself over the CT. The secretary said that the message she'd been given was that he will write next week to confirm that there was nothing of concern to report. Whew.

Of course, as you know, this leaves me with only glandular Sjogren's untreated - as it so often is. As I don't suffer from a severe glandular form of sicca this doesn't worry me much - I have all the eye drops and gels and mouth stuff on repeat prescription and use it all diligently.

But, having had many decades of topical dryness and eczema, I recognise that this isn't the same kind of dryness and the itch and neuropathy affect the same areas simultaneously. So now as I type I have a little electric current off fingertips each time I tap the screen of my iPhone, and my hands are stiff and I can't fold them in for a few hours. But the new symptom is that my finger tips itch too but it's invisible apart from some possible swelling above each nail. I was literally scraping them on any surface I could find until the other day when my old GP prescribed something called Doublebase gel and this has helped to relieve it enormously. This new itch in my very fingertips is the latest invisible manifestation. I seem to be suffering from night sweats badly again too so it is good that the CT is clear of Lymphoma at least.

Was your pm on this forum or on the SS one? I'll have a look. The trouble with neurologist is that she is charming and appears kind - which I interpreted as very passive aggressive and I'm no good with these types. I don't think she will change her position just because my diagnosis has moved from one of RA to one of SS. Last time she said that there were symptomatic treatments only for my SFN and she couldn't recommend further immunesuppression. She said my SFN wasn't progressing and the resulting numbness was irreversible so I just have to accept it and move on. Also said I needed to take up yoga or tai chi for the resulting disequilibrium. I was too nonplussed to respond. She was obviously not the type of doctor to react well to suggestions or requests and the dodgy skin biopsy hasn't been referred to by anyone. So perhaps they were somewhat startled by the way it was conducted too. If I get no joy from her as I expect - then I have to wait until the end of November to see the new rheumatologist now.

I will hunt for your pm now.
Mat x

[en bloc]

I think your emphasis to her should be on the increase of symptoms...showing progression of neurologic manifestations of Sjogren's. You report new symptoms fairly often, it seems. They may be minor in her eyes (itching finger tips, etc, but nonetheless, they are very important, and need to be considered when looking at the entire picture of your condition. If she doesn't do this on her own, then you should, by all means, advocate for yourself and point out how each new neurologic symptoms (however small) shows progression...and list them all.

I don't know if you have been keeping record of your symptoms, but if not, you should. Detailing when each new symptom starts might also show a pattern of sorts as well. Your recording should also include any increase in severity of symptoms you already have. Doctors usually give these types of recordings some importance.

I disagree that your lack of findings on MRI and CT leaves you with only glandular Sjogren's. Your obvious neurological symptoms...reported for quite some time now, and over the years with other doctors t previous places you lived, has to be taken into account. This goes right back to the biopsy. Even you stated once (right from an official report or letter) that they referred to it as 'presumed SFN'. What the heck is that?? 'Presumed' is not a word that should be used in this context. If they aren't sure, then they need to redo the test. You need to point out the failings in regards to this test...as this neuro might not even know that only one site on each leg was done (at the wrong location), or that it wasn't handled properly (transport).

She felt last time that your SFN wasn't progressing...well now it is. And to just 'accept' that your resulting numbness is permanent and irreversible is nothing short of sad and scary. Why on earth doesn't she treat aggressively NOW, so the resulting symptoms don't get to that point of no return?? I would ask this question...word for word. Neurological complications of Sjogren's is far different than that of RA...and hopefully she knows this and will change her tune accordingly.

When is this upcoming neuro appt? (I'm sure you've mentioned it, but I keep forgetting).

[DavidHC]

Thanks for your note and concern. But I've never had the ESR test. I have been negative for ANA and all other markers. It's not impossible that I have Sjogren's but I don't think the most likely. All testing was negative, my symptoms could just as well be from SFN and I'm male. I'm not sure I want to have a lip biopsy at this point with all this standing against the possibility, but I do plan to eventually see another rheumatologist. It's just that the one I saw was the leading specialist in Canada, but that may not mean much, since he seemed pretty set in his ways in some respects.

Originally Posted by MAT52

DavidHC I remember following your posts a while ago and I'm sure you had a very elevated ESR? I wanted to tell you that this could be a very good indicator of Sjogren's if I'm right in what I've remembered. People with SS often have high inflammatory markers because of the systemic dehydration which causes blood to be thicker and higher in protein.

I also should say that I was only officially rediagnosed by a new rheum in a new hospital about five weeks ago. This was because he saw my high PV/ ESR and raised CRP and IgG and found that, once off all RA medications fully - my ANA had turned positive at last. So he asked me to have a lip biopsy and this turned up rude positive for each gland removed. Only in January of this year another rheum said I did not have a CT disease of any sort. End of.

So please never give up until you get proper abusers - in fact it may help you just to diagnose yourself with Sjogren's on the strength of your symptoms and high ESR (if I've remembered this correctly - if not then apologies). There are no treatments anyway apart from symptomatic ones - unless you get extraglandular symptoms or another CT disease or organ involvement.

I know quite a lot of people who have self diagnosed with a connective tissue disease because they have completely negative bloods. And when I read their symptoms I can't believe that they haven't been diagnosed and treated just on good faith. It seems there's a post code lottery regarding how Sjogren's is recognised and treated the world over. The UK. Is certainly not good for SS sufferers even if they are seropositive or meet the criteria for this disease as I do

[MAT52]

Originally Posted by DavidHC

Thanks for your note and concern. But I've never had the ESR test. I have been negative for ANA and all other markers. It's not impossible that I have Sjogren's but I don't think the most likely. All testing was negative, my symptoms could just as well be from SFN and I'm male. I'm not sure I want to have a lip biopsy at this point with all this standing against the possibility, but I do plan to eventually see another rheumatologist. It's just that the one I saw was the leading specialist in Canada, but that may not mean much, since he seemed pretty set in his ways in some respects.

Oops it must have been another NT user then David - sorry. I've been reading Wallace's the Sjogrens Book and the chapter on neurological features says that some people (47%) present with neurological symptoms long before the sicca (dry eyes and mouth etc) turn up and these people are often seronegative.

I do have rheumatic history but my ANA and immunoglobulins only recently turned positive. So I wouldn't discount SS as a possibility yet, although having nothing in bloods and being male makes SS less likely I suppose. But I know from personal experience that things can and do change so it maybe worth reading the Wallace book on Sjogrens and also his book on Lupus. Our symptoms do seem very similar indeed.

[MAT52]

Originally Posted by en bloc

I think your emphasis to her should be on the increase of symptoms...showing progression of neurologic manifestations of Sjogren's. You report new symptoms fairly often, it seems. They may be minor in her eyes (itching finger tips, etc, but nonetheless, they are very important, and need to be considered when looking at the entire picture of your condition. If she doesn't do this on her own, then you should, by all means, advocate for yourself and point out how each new neurologic symptoms (however small) shows progression...and list them all.

I don't know if you have been keeping record of your symptoms, but if not, you should. Detailing when each new symptom starts might also show a pattern of sorts as well. Your recording should also include any increase in severity of symptoms you already have. Doctors usually give these types of recordings some importance.

I disagree that your lack of findings on MRI and CT leaves you with only glandular Sjogren's. Your obvious neurological symptoms...reported for quite some time now, and over the years with other doctors t previous places you lived, has to be taken into account. This goes right back to the biopsy. Even you stated once (right from an official report or letter) that they referred to it as 'presumed SFN'. What the heck is that?? 'Presumed' is not a word that should be used in this context. If they aren't sure, then they need to redo the test. You need to point out the failings in regards to this test...as this neuro might not even know that only one site on each leg was done (at the wrong location), or that it wasn't handled properly (transport).

She felt last time that your SFN wasn't progressing...well now it is. And to just 'accept' that your resulting numbness is permanent and irreversible is nothing short of sad and scary. Why on earth doesn't she treat aggressively NOW, so the resulting symptoms don't get to that point of no return?? I would ask this question...word for word. Neurological complications of Sjogren's is far different than that of RA...and hopefully she knows this and will change her tune accordingly.

When is this upcoming neuro appt? (I'm sure you've mentioned it, but I keep forgetting).

It's on the 12th of this month.

Here's my list to date for your perusal and thoughts if you'd be so kind - communicating with you has focussed my brain (and white matter!):

Worsening symptoms

• Dizziness/vertigo/ disequilibrium/ sensation of falling/ dropping into space when head lifts or turns/ drunk sensation when walking - trouble interpreting steps and patterned flooring/ artificial lighting issues leading to confusion
• Parasthesia (stinging, very sore, achy) in hands and wrists, gums, lips and eyes (more pronounced on left side) and crawling on legs
• Sicca
• Swallowing problem
• Bad taste – like salt and vinegar
• Wrist drop and poor grip
• Fatigue

New Symptoms

• Vision issues/ sudden blurring
• Uncontrollable body temperature swings – sweats (especially at night)
• Tinnitus - hearing over sensitive
• Constipation
• Itchy fingertips despite little sign of dry skin
• Breathlessness with hoarseness and throat clearing
• Thirsty
• Morning pain in feet and ankles
• Bad pain and severe stiffness in knuckles – early hours of every night, lasting for a bit longer each day. Can't lift duvet or move pillows about without excruciating pain in pinky and index finger knuckles of both hands. Impossible to clench until hands start being mobilised a few hours after waking.

[DavidHC]

Thanks, Mat. It goes without saying that we share a number of symptoms, and I see this quite clearly looking at your list of symptoms. We do both have SFN, so that's likely it. I'm not sure if we have the same cause, but it's certainly possible. I'll keep looking and perhaps at some point I will have a lip biopsy. Like I said, at some point I will see another rheumatologist. Unfortunately I'm too busy for that these days. Perhaps in the new year.