You’re right. I had a big emotional breakdown in the end last night because I’d been holding in so much worry. It’s been difficult to calm my nerves and not panic about the future. I think I got it in my head that not only has life as I know changed, but that I’m not going to be able to do the two things I’m so desperate to do - travel and have a baby. I’ve been very dramatic about it, but falling so unwell so quickly has simply been a very distressing experience. This is why I’ve appreciated your replies, as well as others here, so much.
It sounds like you’ve had a long journey so far, but I find it reassuring how much medical assistance/help you’ve had. Are you based in the US? I’m in England and have a lot of faith in the NHS but recognise that I may not be able to rely on one neurologist entirely - I have to wait and see what happens rather than trying to predict. There is the option to go with private healthcare worst, worst case. Though I’m not sure if it would make a huge difference.
I’m lucky in that I’ve not had any cognitive issues, it’s all been very physical. I also haven’t had any issues with balance or walking besides the fact that I’m too tired to get around much - it’s a deep fatigue in my body which I’m sure you can relate to.
I haven’t eaten something warm, or a meal in almost a week now. Had a piece of watermelon this morning as it was the only thing I could stomach but it came straight out of me - not an enjoyable experience! I’ve had some scary symptoms like my throat feeling tight/pressured and it makes me feel like I suddenly won’t be able to breathe or like I’ll lose the ability to swallow. I’m likely getting too ahead of myself. I’m stronger than this.
Everything you’ve said to me I will remember and keep in mind constantly through my experience. I truly hope that you continue to progress with your health. Your communication has helped me to calm down a bit throughout the night and remind me that I’m not the only person in the world struggling with health issues and certainly not the worst case. Thank you.