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08-05-2016, 03:59 PM | #1 | ||
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Hello. Well it seems I've tested positive at last for Primary Sjogrens! This is the definitive result from my lip biopsy where high numbers of lymphocytes were found in my four salivary glands. This is surprising because I don't have the oral dryness or severe Sicca usually associated. My Sicca is reasonably mild although it has been bad periodically - but manageable. My ANA points more to Scleroderma apparently, so I have no idea what the new rheumatologist will say when I finally get to meet him on 24th of this month. He must have suspected that my SFN indicated Primary Sjogren's because it was he who instigated the lip biopsy and parotid ultrasound.
My main symptoms continue to be the non length dependent SFN and ensuing proprioception issues. But I also have gynae problems, strange constipation and horrible palpitations after chewy, or dry food or icy drinks. Plus very nasty tasting mouth and salty saliva - not confirmed by any oral dryness or parotid issues according to ultrasound yesterday. All a bit baffling but I'm really hoping that this diagnosis will at last allow me to try further treatments that modify/ slow down the small fibre polyneuropathy - which I've long been convinced is part of an inflammatory process. Meanwhile I wanted to add that I'm so grateful for the support I've had from this forum over the years. I have learned so much from you all.
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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08-05-2016, 04:24 PM | #2 | |||
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Member
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I feel funny congratulating on being diagnosed with a disorder, but we all know that really can be a good thing! Hope they can treat you properly and that you get relief from the SFN.
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"Thanks for this!" says: | mrsD (08-05-2016) |
08-05-2016, 04:49 PM | #3 | ||
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Member
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Thanks so much Janieg. I know it's sad but I skipped out of the dental hospital yesterday (or as near to skipping as numb feet and dizziness would allow!). I think congratulations are well in order - bizarre as many non sufferers would find this!
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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08-05-2016, 04:52 PM | #4 | ||
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Junior Member
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Mat,
That is great news that you have a diagnosis. I know how frustrating it is not to know. Is there any way you are in ketosis from a low carb diet? That can cause a nasty taste in your mouth. I am keto adapted and my mouth and breath smells/tastes like acetone (nail polish remover) it's the worst! |
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"Thanks for this!" says: | mrsD (08-05-2016) |
08-05-2016, 05:02 PM | #5 | |||
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Grand Magnate
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Mat, having a firm diagnosis sounds like a big step forward to me.
I hope that your care team can work with you on that from here.
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Knowledge is power. |
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"Thanks for this!" says: | mrsD (08-05-2016) |
08-05-2016, 05:14 PM | #6 | ||
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Member
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Yay - I know it's great to have a name to blame at last! So grateful to you Kiwi you've been a great source of information and sound advice I must say.
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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"Thanks for this!" says: | mrsD (08-05-2016) |
08-05-2016, 05:08 PM | #7 | ||
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Quote:
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases Last edited by MAT52; 08-05-2016 at 05:24 PM. |
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"Thanks for this!" says: | mrsD (08-05-2016) |
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