Quote:
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?
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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