JaneTX

Looking through my copy of the Mayo 2019 Test Catalog, I don't think it is part of their neoplastic panel. Their panel does include the nicotinic acetylcholine receptor antibodies associated with Myasthenia Gravis, but I can't see anything that might be for muscarinic acetylcholine antibodies. Gastro doctor has not indicated any medicine yet, they want us to pursue nutritional options first I suppose the idea is to see if the gut will do a little bit of healing on it's own first? Maybe if we jump up and down on one leg, pat our head, rub our tummy and sing our favorite tune, that would help too. Anyway, this upcoming week we're off to see a new neurologist. One would think a neurologist would know something about the autonomic nervous system and acetylcholine receptors? I will look into Domperidone, we have access to a compounding pharmacy and a primary physician that supports us 100%. Thanks!

While my daughter has a formal diagnosis of dysautonomia (irregular resting heart rate and she takes propranolal which really helps), her specialist doesn't think it's dysautonomia per the standard definitions for it (as she doesn't even remotely have POTS), but rather her symptoms are being caused by an as-yet-undiscovered antibody. As she has other symptoms and we've spent our time recently chasing other leads, the dysautonomia aspect was set aside. Fast forward, she tested positive for nicotinic acetylcholine receptor blocking antibodies, but not positive enough to get a Myasthenia Gravis diagnosis as her EMG test was normal. Her latest diagnosis is gastroparesis and low intestinal motility. I've read that there are 2 different types of acetylcholine antibodies (nicotinic and muscarinic) and that MG is caused by nicotinic antibodies (and there are plenty of tests available to diagnose those). But I haven't come across anything about possible muscarinic acetylcholine antibodies (like binding, blocking or modulating), like what's known on the nicotinic side of things. Since she has acetylcholine antibodies floating around in her blood stream, it got me to thinking about the potential and incredibly significant impact muscarinic antibodies might have on the autonomic nervous system, including gastroparesis. And that the adrenaline side of things might be working okay but the acetylcholine side of things is being interfered with, thus looking like an adrenaline problem. So can anyone bring me up to speed on the current state of research into muscarinic acetylcholine antibodies? I don't see much in the gastrointestinal camp (as it seems they're slow to acknowledge that the immune system can really mess up the GI tract). She has been on methotrexate now for about 3 months (I've been told MTX doesn't reduce antibody count, but in theory it slows down regeneration of activated lymphocytes and consequently should decrease production of antibodies), other symptoms have been easing (but not yet the gastroparesis though 3 months may still be too early to tell). i personally would like to find a way to nuke the activated B lymphocyte plasma cells (the antibody generators) and give her immune system amnesia and see if many of her symptoms go away (wishful thinking). Thanks for any input you can give.

Hi! I'm new to DINET, so pardon me if I make any newbie comments. My daughter was diagnosed with Dysautonomia over a year ago, but had some other seemingly unrelated medical issues (Celiac diagnosis and gallbladder removal) and the Dysautonomia diagnosis kinda fell off the radar. Her symptoms don't seem "typical" that I've read about, no POTS but very hormonal - her periods have stopped, 4 months ago normal thyroid, last month low cortisol and ACTH, now normal cortisol and ACTH and suddenly high TSH and Prolactin. I have been furiously researching hormones (and still know very little). But she's on Propranolol, which is a beta blocker, and what I've read beta blockers block the effects of adrenaline, thus calming down the heart. I had been researching secondary and tertiary adrenal insufficiency and I also ran across an interesting publication that discusses how low cortisol can "unmask" adrenaline (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC22067/). Also important is that both cortisol and ACTH be measured together (output as well as input), seems doctors frequently look just at one and simply guess about the other. Right now she suddenly is needing a lot of salt and drinking a lot of water and I'm now looking into the term hypovolemia. (I'm basically a 3 year old - why, why, why!) I'm wondering if low blood volume or some sort of sodium dysregulation is starving her hypothalamus and pituitary and thyroid. Just some thoughts.