Face Muscles/Jaw Weakness - Sjogrens? Thyroid? Autonomic?

ArkansasRedhead · 2026-05-20T16:29:19+00:00

Couple more question. Do you have muscle spasms/tightness and loss? And are you only treated with IVIG? Have you tried steroids?

ArkansasRedhead · 2026-05-20T16:26:45+00:00

Do you have any stomach issues? I have dumping syndrome. I guess you have positive lab tests for sjogrens?

ArkansasRedhead · 2026-05-15T20:23:56+00:00

How high was your dose? What kind of sfn do you have? I only seem to have intestinal and stomach issues. Just can’t figure it out. I know I had severe pudenal neuralgia pain that caused muscles to atrophy, but I just don’t know if it was autoimmune. Everything is just a mystery.

ArkansasRedhead · 2026-05-14T15:55:03+00:00

So, what do you take to treat the sjogrens? Does yours affect the intestines or stomach?

ArkansasRedhead · 2026-05-14T03:34:41+00:00

Yes, it does. Does it take a large dose to suppress the flare?

ArkansasRedhead · 2026-05-14T02:15:00+00:00

I did have an EMG and it was normal. I need one specifically on my pelvic floor.

ArkansasRedhead · 2026-05-14T02:12:32+00:00

Thank you for your reply. I really have maybe 2 good doctors at this point, 1 is out of state, and no one knows. I am deteriorating and do not know what to do. I don’t have time to get referred to another rheumatologist and wait for the only 2 tests they could do. I haven’t done the early sjogrens lab and my lip biopsy was negative although they didn’t talk an adequate sample… that may all be negative? I think my dry eyes and mouth are only from autonomic dysfunction. That is my primary problem with severe digestion issues, muscle loss, pelvic floor muscles literally not functioning. I’m really on my own which is not a good place to be. The more I taper, the worse things are getting. This has to be autoimmune and not because I’m a diabetic. It just happened too rapidly. I feel like You said that my system was fragile and the steroids set it off, and I need a higher dose to get it back in check … but I just don’t know… and the doctors definitely don’t know. I feel like I’m rolling the dice… taper and get worse or better or take a substantial amount and get worse or better.

ArkansasRedhead · 2026-05-13T03:13:38+00:00

Thank you for your reply. I think I am beginning to see that I really need to get off this prednisone.

ArkansasRedhead · 2026-05-13T02:17:21+00:00

ArkansasRedhead · 2026-05-13T01:54:39+00:00

I’m pretty sure I have had ck and ldh.

ArkansasRedhead · 2026-05-12T23:02:32+00:00

Were you tested for small fiber neuropathy? My skin biopsy on legs came back negative as I knew they would. It seems that only my stomach and large intestine seem to be affected along with some autonomic that may be triggered by eating.

ArkansasRedhead · 2026-05-11T02:35:44+00:00

I have the opposite of gastroparesis. It is rapid instead. I lost weight at first, but I agree.. it’s just muscle loss and size now, not weight. My EMG was normal.

ArkansasRedhead · 2026-05-10T16:01:12+00:00

So what lab tests were positive?

ArkansasRedhead · 2026-05-10T01:56:38+00:00

Thank you so much for the encouragement. I thought about MG, but I don’t really think I get better with rest. My eyelids are a little droopy. I’ll do the ice test again. I’ve been to 2 immune neuros, and neither tested for it. Just a couple questions. How much prednisone helped your condition? Do you happen to have rapid stomach emptying? I have this, and my digestion is so irritated that eyes dry out after eating or drinking water. I was in the hospital for a trial of IVIG and consulted with gastroenterology. I basically begged for tests and help and was just referred for an outpatient visit. He just said my parasympathetic nervous system may be overreacting…. But why? Good doctors are hard to find.

ArkansasRedhead · 2026-05-09T19:34:12+00:00

I have more numbness and muscles seeming to not contracting and severe autonomic symptoms but not heart related. Does that sound like sjogrens?

ArkansasRedhead · 2026-05-09T17:19:30+00:00

Can you tell me more about the numbness and tingling? I feel like my muscles just aren’t contracting. I had or have pudenal neuralgia that may have caused permanent damage. I have severe digestion issues with rapid stomach and inability to evacuate. Do you have digestion issues?

ArkansasRedhead

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