Needing help understanding Test Results

Hi Melissa. I'm so sorry. Yes, all of your symptoms are familiar to us here. And common. It doesn't mean you have MG, but I think it's shameful that three years later you still don't have a diagnosis. You need to be treated. Without a diagnosis, and a clear determination that you have AChR binding antibody, a doctor does not know how to treat you. Let me just give you some facts as I understand them.

1) It doesn't matter how much bad antibody you have in your blood. The level may change constantly for no evident reason and continued testing is unnecessary. The right amount of AChR binding antibody is pretty much zero. It is something a healthy immune system does not produce.

2) Pyridostigmine is also diagnostic of AChR positive MG. Have you tried it and what were the results? Pyridostigmine was a miracle drug for my AChR positive MG. It doesn't work for MUSK and may even make it worse.

3) If you have MG, a delayed diagnosis may result is continued destruction of neuromuscular receptors, a growing risk of a Myasthenic crisis, and the risk of being treated with certain antibiotics and live vaccines that pose a danger to you.

It's time to get mad. We've all been through this pre-diagnosis hell, and we're all on your side. It shouldn't take a crisis to get your doctor's attention. Unfortunately, for many of us, it did. Hang in there.

3 years later and I still have no diagnosis, but now my Achr blocking is 25 and 26 would have made it indeterminate. I know not to expect a diagnosis from online members but I’m sure other people have had experiences with borderline test results and I’d like to hear from them how they finally accomplished accurate diagnosis. I’ve thought about requesting a muscle biopsy and will be having my follow up with my neurologist in a few weeks. My regular emg was normal, it wasn’t single fiber or specific for MG. My proximal muscles are weak with repetitive movements, I cannot hold my arms above my head to blow dry my hair I have to rest my arm on the sink, I cashier and scan for 4 hours but any lifting away from my body is like 500 lbs, when I crouch down my quads get super weak and shaky and I have to pull myself up with my arms. After scanning For 4 hours my arm is shaking when I lift a bottle of water to my mouth, I have had a few episodes of not being able to lift my feet off the ground to walk they were so weak. I have trouble swallowing especially liquids, I use a spoon or a coffee straw and sometimes I drool unexpectedly. I have had blurred vision, double vision with no explanation and it clears up as quick as it started. Does this sound familiar? I’m just wore out from all the years of appointments and discouraging feedback from doctors. I don’t think I’m presenting myself as sick as I feel.

Melissa, there are a lot of articles about this topic. We can neither deny nor confirm your test results. However, maybe these 2 articles will help!


https://myasthenia-gravis.com/blood-tests

https://myasthenia-gravis.com/clinical/understanding-antibodies



Best wishes! - Janice (Myasthenia-Gravis.com Team)