Quote:
Originally Posted by cyclelops
Autoimmune conditions span the gamut. AAG IS the underlying disease.
It took me a long time to get that thru my head.
AAG is a stand alone autoimmune disease.
The elevated ANA is caused by a yet unidentified antibody, hence a negative ENA.
Dry eyes and dry mouth are the product of a malfunctioning nerve to those organs and it will show up as lymphocytic infiltrate in a labial biopsy....because the nerves are undergoing the same inflammation as is present in connective tissue disease.
I have read that AAG is the sensory version of ALS (which is motor.) ALS affects the anterior horn, AAG the dorsal root. One is motor, one is sensory. Totally different diseases, but similar in that they are a degeneration of the nerve roots at the spine. ALS isn't secondary to any other disease, it just is. Same with AAG. It just is.
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Hi I'm new here and this thread is fascinating to me. I have been on many forums but none where people know so much about their conditions and the scientific aspect of these!
I am still on a very slow path to diagnosis and am really anxious that my SFN will be branded as "idiopathic". I do have a confirmed diagnosis of Rheumatoid Arthritis and have spent three years on steroids and DMARDs but haven't tolerated three of these now and have also failed to tolerate Amitriptyline, Gaberpentin and now am not getting much from Cymbalta at all.
I have learned from my GP that my lumbar puncture shows high immunoglobulin - which he says confirms that my symptoms are immune mediated at least.
I have very dry eyes but no blepharitis and my mouth gets dry, especially on certain medications - but my oral hygene is good which my dentist says it wouldn't be if I had primary Sjogrgens. The neurologist said that my Sjogren's antibodies are negative and sees no purpose in my having a lip biopsy. As I have RA the Sjogren's is very normal as a secondary condition.
It sounds to me as though you need immune suppressant drugs. Hydroxichloraquine is the gold standard disease modifying treatment for Sjogren's and also for Lupus, RA and other connective tissue diseases. Unfortunately it made my face and lips swell and gave me a painful rash after a year - although it worked very well for inflammation and many tolerate it fine.
Topical treatments to keep your eyes from developing corneal ulcers are very important. I use Lacri-lube at night and Hylo Forte drops (preservative free) during the day -sometimes hourly. Keeping the mouth moist during the night is important too and avoiding sugars and keeping your mouth as clean as possible is very important. A good rheumatologist should be able to diagnose Sjogren's with or without positive antibodies but I think there is a lot of ignorance about this disease and the ways it can affect a person. Dentists and opticians tend to see it more realistically.
A good optician should be able to perform a tear break up test on you and see whether you have enough tears. A good dentist should be able to see how much saliva your glands are producing. I also have Salivex pastels to suck when my mouth gets dry - they are really good.