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.
I have MG and I am Sero positive but Musk negative. Mestinon can be hard to take. For me, I get stomach aches unless I take it with food. Muscle fatigue is strange with MG, hard to describe and uncomfortable. It also comes on quickly when exerting yourself. Prednisone is a common med for MG too, I take 20mg/day. I hope you find a doc that is familiar with MG and can get some help soon. It is likely that you have it but a real diagnosis will help you get further treatment.
I found an article today you should read. It's titled "What to do while awaiting a diagnosis." Just hit the "search" button next to the menu in the top bar and type in the title.
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 🙏🙏🙏
Very wise words David, for sure. I'm sorry to hear that you've been through this, too. I was at the beach today, forcing myself to bodyboard. I over did it in the sea, big style. I was reasonably okay in the water but when I got out I literally collapsed and my husband had to get my clothes and help me change out of my wetsuit. I felt so indescribably exhausted.
I had that exact conversation with him about being so used to exertional discomfort (I also used to be cyclist, and wild camp etc.) that I don't know when too much is too much. It's something I must teach myself, especially when the sea is involved. I'm feeling better now, but my legs are not in a good way this evening. It used to be a nice feeling, that 'I'd done something challenging', but this feeling I have tonight is definitely not a nice one.
Still, lessons to be learned and I really appreciate your advice. Thanks again 🙏🙏🙏I am happy to be of service. MG is a very complicated condition and, if you have it, you have much to learn. For instance, some antibiotics are very dangerous for you, as are vaccinations with a live virus. But let's not jump the gun. Get back to us after you've been to the clinic. Your neurologist will probably repeat the blood tests for AChR binding antibody and MUSK antibody. I'm perplexed that your test was negative but pyridostigmine helped. Pyrid (Mestinon) is not just therapeutic, it is diagnostic. If it clearly improves your symptoms, it normally indicates AChR positive MG. If you have a droopy eye, lie down and apply an ice pack. If that helps, it's another easy test for MG. It is possible to have what's called seron negative MG, a type of MG that is not associated with the usual antibodies. A good neuromuscular neurologist can test for that, too. So let us know what you find out. Hopefully it is not MG. If it is, you've come to the right place. This site has hundreds of articles to accelerate the learning curve and it has many long-time MG sufferers who will offer compassionate help. And in the meantime, remember exertion weakens an MG-affected muscle. It doesn't strengthen it. Rest does that best. Search on how to exercise safely with MG. There is an abundance of information here. Best of luck to you. Be strong. David
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.
