Frustrated with awaiting a diagnosis
I have been struggling with intermittent double vision for over a year. I've had several MRIs. First scan showed a white matter lesion, but Neurologist said this is inconsequential and not related to my vision. My Myasthenia blood tests came back negative, but I have responded positively to Mestinon. However, neurologist still won't confirm ocular Myasthenia.
Most confusing is that my legs have stopped working properly. I was exercise crazy, but now I can barely walk around the garden. I've lost my sex drive. I get weird twitches in my arms. However, neurologist literally said 'I don't see any connection between your eyes and your other symptoms'. He's referred me to a neuromuscular clinic (at my request) and he's discharged me. All my symptoms seem to sound like Myasthenia Gravis and neurologist just won't make this connection. I'm so depressed and crying most days. The Mestinon makes me sick, and yet again Neurologist said 'sickness isn't a usual symptom, I've never heard anyone say it makes them sick'.
I'm awaiting the neuromuscular clinic (I've got a 2 month wait), which apparently will 'be dissolved soon and won't be replaced' anyway, so it's only likely I'll see them once. I'll be in a wheelchair if I don't get help soon. What should I do? Thanks in advance.
Thank you so much, David. Yesterday was a particularly bad day, but I'm feeling a little bit more positive today.
I've got anti sickness meds from doc and I've got a full consultation in a week with GP. I suspect he'll suggest waiting for that neuromuscular clinic. He's incredibly supportive (unlike my neurologist! 😞)
Heat and cold make things particularly worse and I guess it'll take a little time to adapt and come to terms with what's happening to my body. I'm 42 and, as I said, exercise has been my life. It's heartbreaking. However, I've got to keep focusing on that light at the end of the tunnel!
Thanks again for taking the time to reply 🙏🙏🙏
I'm so very sorry, Victoria. Your story is so familiar and is shared by dozens of people on this forum. Getting a diagnosis is often maddeningly difficult. But you are doing exactly the right thing. A neuromuscular specialist will sort it out. Eyes are focused by six muscles, not much different in function than the muscles in your legs. If an antibody in your neuromuscular junctions is interfering with communication to your muscles, problems can pop up in any voluntary muscle anywhere. In the meantime, continuing your doctor's Mestinon prescription plus an anti-diarrheal is a good stop-gap measure. Don't let yourself overheat when outside gardening. Heat is the enemy of neuromuscular disease. It can almost paralyze my legs. Please be patient and try to stop worrying. Be confident that you are doing exactly the right thing.
