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Sjogren's Question

Autoimmune Diseases | Last Active: 4 days ago | Replies (57)

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@j77
It has been over a year since you have posted anywhere here, and I'm hoping things have gotten better for you. I have many diagnoses, some similar to you.

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Replies to "@j77 It has been over a year since you have posted anywhere here, and I'm hoping..."

Hello! The specialists are still trying to figure it out, but my test for AAG did come back elevated which would explain my severe autonomic issues the first two years. I still have alot of autonomic issues.but not like the first year. I guess that must of been an autonomic crash brought on by covid/iron infusion and probably years of heavy periods/Anemia. My ANA keeps on going up, but not super high. I just have a positive speckled pattern of 1.180. I did have an abnormal shirmers eye test where the Doctor suspected Sjogrens right away, but of course my sjogrens blood work and lip biopsy were normal. I do believe I have NeuroSjogren's though which can cause the autonomic symptoms, small fiber neuropathy, the collapsed torso feeling and effect your cranial nerves which would explain my lack of gag reflex . I think a combo of AAG, SFN, Neurosjogren's or Long Covid can bring that on. I have not been tested for SFN yet and I have not had a muscle biopsy yet. I am meeting with a NeuroLupus Doctor soon. I guess Lupus could be involved too, but I feel like my symptoms match up more with NeuroSjogren's. The symptoms I have had since I was younger were probably early signs like the severe bleeding gums, but never a cavity, weaker upper arms with repetitive movements, weaker diaphram, severe exhaustion, weaker smile. I thought alot of these symptoms were just from my thyroid disease my whole life. I did get tested for Myasthenia Gravis and Lambert Eaton Syndrome, but those tests came back negative. I do have the Neuromuscular junction fatigue, but I think it may be the Neurosjogrens mimicking MG and LEMS. Autoimmune Diseases are so difficult to figure out because they are all so similar and if you are seronegative it makes it so difficult for the Doctors to figure it out and to get treatment. Overlapping diseases are tricky for them too. When I was at my worse low dose steroids got me out of being bedbound for over a year and able to eat actual solid food again. I feel like that is such an important clue. What symptoms do you have that are similar? What tests have you had so far?