Sorry to read your news.
I am also without confirmed diagnosis but started with Transverse Myelitis. Best advice I can give you is try not to worry (arrghh easy to say I know) and don’t frighten yourself with the Internet (again, easy to say). I felt very overwhelmed when I started on this journey (2012) and do surround yourself with friends and family and don’t feel bad about talking about it as it does help. There’s a lot you may feel that you don’t know and a lot of fear.
I did not know where to turn first and the forum frightened me (initially), so I rang the great folks on the helpline and they sent me a bunch of information. I then felt brave enough to engage with the forum and kicked myself for not doing it sooner as the amazing folks on here were (and still are) a great comfort. They have a wealth of experience and knowledge and are great with support on the days you just feel like it’s all too much.
If you have a follow up/additional appointment with your neuro, don’t be afraid to go in with a bunch of questions. I did and looking back, I must have had some crazy ones (like - is it ok to dye my hair/use nail varnish/what should I eat/not eat etc etc) but I had never heard to TM or MS and I just did not know what I should or should not do.
My journey has been tough (not so much on the health side, but the navigation of the NHS/private system and trying to understand what I have and how to deal with it). This does not mean yours will be but I guess, my best advice to you is to not be afraid to ask the professionals that may now be involved in your life all and any questions that you think may provide you with support, advice, a pathway and a management plan.
Also, as I was told, an ‘attack’ of TM may also be just a one off incident and may never occur again/develop into MS. Look after yourself and ensure that you (if you have not already) get your Vit D & B12 checked and ask for the numbers for both as GP’s rarely understand the normal ranges and us folks that have these sorts of issues (whether one off or not) tend to be on the low end of the numbers and the GP’s always say we are fine but most good neuro’s like our numbers to be much higher. I know that when my numbers are low, I really feel it but bounce back quickly when I take the relevant supplements.
Can I ask what your presenting symptoms were?
Feel better and this forum is a great place for questions/ranting/advice.