Originally Posted by cyclelops

I have and still carry the diagnosis of Sjogren's, but what I have and also am diagnosed with is Autoimmune Autonomic Ganglionopathy.

I DO have musculoskeletal pain, but it is in the fascia. I have 2 torn rotator cuffs, bilateral hip bursitis, both knees have been shot up for tendonitis, both feet plantar fasciitis, both wrists and hands, tendonitis and arthritis. Basically my fascia is very inflamed and if I do not drink like a water buffalo, I can not move as these tissues need lubrication. It's 'Sjogren's' in all the fascia.

Yes, eyes and mouth are dry. Also gastroparesis, esophageal issues, severe constipation, odd MS like sensations such as numbness of both legs up to the hips at times. Extreme fatigue or the sensation of being unable to get up without maximal effort, then when standing, I see spots and get tunnel vision. I get 'coat hanger' headaches which are migraine in quality. Muscle spasms, fasciculations, arrhythmias, raynauds like pain when exposed to cold, intractable insomnia, anhidrosis you name it, I got it. Why? Because the only organ that can cause this much misery is your sensory nervous system-autonomic nervous system...it controls it all. PLUS, most medications make matters worse. I have found the less the better for me right now. My body is so sensitive, I can feel when I take a Tylenol. Yes, I do occasionally take something stronger, but it is few and far between.

Autoimmune Autonomic Ganglionopathy is FINALLY starting to get some press. When I got my diagnosis, I couldn't believe there was a Dysautonomia as a stand alone disease. There is and it takes an autonomic specialist to find it because Rheumatologists don't do neurology. My ANA is positive, and I believe that the positive ANA I have is because the test is picking up the neuronal antibody that is attacking my small fibers and dorsal root ganglion.

I don't think I have Sjogren's Syndrome and for a long time I did. Then the doctor said I was way beyond the scope of that. So, I'm OK with the new face of the old symptoms. For me, it's AAG. To help others understand, I tell them it's like Lupus but attacks the autonomic nervous system.