anti-musk positive on ELISA, negative on CBA
hi folks, i’m a new member of a club i wasn’t expecting to join. i’m in the middle of the diagnostic odyssey. I tested positive in India for anti-musk ELISA and negative in the US for CBA. The reason the neurologist tested me in India was because I was having diplopia. That was in December 2025. I didn’t see the results until February when I was back in the US, my bad. Since then it’s moved into the bulbar muscles. I have a swallowing study coming up in a few days. I saw a Neuro ophthalmologist yesterday who determined that my double vision is due to misaligned eyes not MG. So I guess the diplopia is just to aging, but the fatigue came from use, but not in the MG sense which sent me to get an MRI and the tests in India. And I just wanted to share because I’m kind of and not the best happiest time right now, so I thought I would see what my MG siblings are up to.
by the way, the swallow study showed only slow movement and a hesitation which the radiologist was also inwardly rolling her eyes at me as can be seen on the report she made.
hi David, thank you for your response. I only just saw it now. My neurologist has declined to treat me. And my appointment with a neuromuscular neurologist is in May 2027. And people around me my loved ones some are thinking that I am crazy to pursue this. They think I’m fine. It’s hard for me to sleep because my throat goes dry when I’m horizontal, this is started like a month and a half ago. My brother says that all the symptoms I have are what people of normal aging have. So why does mine have to be a rare disease?
Hi Saru. Welcome to the club nobody wants to join. You are in a difficult position, having one test positive and another negative. But many, many of us experience these early-stage uncertainties, with perplexed physicians who keep wanting to test and not treat. With new bulbar symptoms, it's time to act decisively. My suggestions:
1) See a neurologist, not a neuro ophthalmologist or any other specialist.
2) Get a new blood test.
3) In the meantime, presume you have Myasthenia Gravis. Any positive test cannot be ignored. Insist on immediate treatment even if they want to test more.
4) Pyridostigmine is always a good place to start. It is diagnostic. If it helps, you probably have anti-AChR Binding MG. If it doesn't, it is probably MuSK.
5) MuSK is harder to treat but normally responds well to Prednisone.
6) Both acetylcholinesterase inhibitors (pyridostigmine) and large doses of corticosteroids (Prednisone) are stop-gap treatments. But one or the other should get your symptoms stabilized while a good neurologist works out a long-term treatment plan. There are many good, new pharmaceuticals highly effective even against MuSK.
7) Your doctor may also want to try an IVIG as well. That would be a useful step.
😎 Avoid doctors who want to treat specific symptoms, like diplopia or swallowing problems or chewing problems or speech issues or neck weakness. They won't help you and will delay you on the road to treatment for the root cause.
9) Be patient. The early years of MG, all the uncertainties and misdiagnoses and rampant symptoms, are always the worse. It may take a year or more to find the right drug and another year for it to become fully effective. But know this: You can and will get MG under control. You can live a long, productive and happy life.
Best of luck to you, Saru.
