Quote:
Originally Posted by en bloc
Sorry to be late in reply. I'm so glad you finally have answers...and to be honest, I'm not surprised at the answers you received. Being that I have primary Sjogren's and ganglionopathy, I could see some of your history matching mine. I too am sero-negative for Sjogren's, but very positive via lip biopsy. Actually, my lip biopsy report says that there was so much loss of acinar structures and the degree of fibrosis was significant, that they considered it consistent with Sjogren's at end stage.
I hope they still follow up with checking for Scerloderma based on your ANA nucleolar pattern. As I told you before, it is possible to have overlap of autoimmune disease processes...and the member from Sjogren's World had both along with profound neuropathy.
There are actually many people with Sjogren's that don't have overly dry mouth. My mouth isn't that dry any more. I have times when it is more dry, and times when it isn't that bad. You should see a dentist though, as dental problems are common with Sjogren's and even slight bacterial changes in the mouth (from less saliva) can cause gum disease, cavities, etc.
Your new GI symptoms (constipation, etc) may be explained by some autonomic neuropathy...also very common with Sjogren's and ganglionopathy/neuronopathy.
I know you have tried various DMARDS, like Plaquenil without success and having many side-effects. I hope they consider IVIG for your symptoms and neuropathy...you would definitely be a good candidate. I have found IVIG to help Sjogren's symptoms and some of my neuropathy symptoms. However my neuropathy and Sjogren's was confirmed too late and therefore there was too much permanent damage for significant improvement with biologics and IVIG. But I do have less pain and I think it's has helped with slowing further progression. My autonomic symptoms also seem to be better managed, which I attribute to IVIG. With your new Sjogren's Dx and history of confirmed SFN, you should not have a problem being approved for IVIG...even in your location.
Please keep us posted.
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Thanks Enbloc. Yes whenever you've described your neuro experiences I feel I'm somewhere behind you with very similar symptoms. Very helpful to know that your mouth isn't usually severely dry. Like you mine goes in stages. I know my teeth are weak and I have had many fillings and have had plenty of root canal treatments and crowns.
However, some years ago I took my sons to a dentist. He looked at youngest son's teeth and said that, unlike the other two, he obviously slept with his mouth open. He explained that this has a pretty devastating impact on oral hygiene as the saliva doesn't flow overnight, leaving bacteria to do their thing unimpeded.
Ever since then I've woken, as I always do because of bladder calls and pain, and found myself clenching my mouth shut for dear life! I now have to wear a mouth guard because bruxism has made its mark, but I'm convinced that keeping my lips closed at night is one of the reasons my teeth are much improved from how they were in my younger days. I do get a very blocked, dry nose - periodically full of ulcers that trigger nose bleeds. And have had a bothersome dry cough for years. Also I'm getting these severe palpitations after eating now which I think are vagus nerve related to the act of swallowing/ chewing. So it seems to me that this must be where my Sjogren's lands. But I also think I've had it for decades and that the RA symptoms were just a manifestation of it. The neuro symptoms started well before the polyarthritis and synovial swelling.
I don't think I do have Scleroderma - or maybe a mild version (ie CREST) because I really don't have the external skin hardening apart from on my toes and one elbow- and no ulceration or calcium deposits, only mild Raynaud's and circulation madness caused by the SFN. If a nail fold capillary test is ever done then I think they will only see telangliectasias at the tops like red halos with the odd splinter haemorrhage - none in the nail folds themselves, a very reliable indicator of Scleroderma I'm told. My nails are more PsA/ Lupus-like.
Interesting about constipation. I'm convinced it is autonomic because it isn't stress related and I have no abdominal discomfort. It's as if my brain has forgotten to signal to my bowels to work - so, like a broken lift, the doors don't open often and the lift shaft is now not functioning properly either despite all the Laxido! It reminds me of a friend with MS's description of hers.