I hope you’re okay, even if you don’t get a diagnosis of MS your head is bound to be spinning for the next few weeks.
I’ll give you some of my random thoughts, but I’ll do it from the position that you do get diagnosed with MS, because that’s my experience. Even though I’m surprised that they would give you that sort of news over the phone. If you don’t get a diagnosis of MS of course then you’re in a whole different world of questions probably starting with what else could it be.
Create yourself a document on your phone or computer or somewhere where you can start to write down all the questions that are going around your head, firstly it will mean that once it’s on paper you know you’re not going to forget it so it doesn’t have to keep spinning round in your head, and secondly it will be a great way to organise the questions that you want to ask your neurologist.
The questions that I wanted answering were what sort of ms have I got, Will I end up in a wheelchair, how long will it be until I end up in a wheelchair, and what do I do next. The answers were A) in 10 years we will know with the benefit of hindsight, B) it’s too early to know, C) it might never happen, and D) here’s some leaflets to read.
This was in 2003 though, so there wasn’t an awful lot on the Internet! I’m guessing you would’ve already done a fair bit of research into the condition, so the different types of disease modifying therapy might be a little bit familiar to you? I wouldn’t worry too much about understanding all of them, your neuro is likely to suggest a shortlist for you to select from, and the conversation around that Will probably involve him explaining to you the reasoning why he thinks they’re the most appropriate. It may even be that they want to wait a while to get a couple more scans in, so really what you want to know is what his approach is going to be and who the team is around him who will be supporting you. Most hospitals have a team of MS nurses now, so you want to know how to get in touch with them, what is appropriate to contact them about, and how will you know if something is a relapse or just one of those random things. Ask how often you’ll be seen in clinic, or whether it will always be over the telephone, and who do you speak to if you need to change your appointment. You might get the number for his secretary, or he may just give you the number for the nurses. Ask how often you will be getting an MRI scan, it should be at least annually. If you can, try to make a record of all of the symptoms that you’ve had. Some of them might have had nothing at all to do with MS so it’s good to go through them with your neurologist to get an understanding of what is and isn’t relapse because it helps you to recognise them in future. You’ll be hyper vigilant of every little symptom for a while and you’ll be noticing things that you never would’ve noticed before so a little bit of guidance never goes amiss.
I don’t think I asked many questions for the first year or so, because I was a little bit shellshocked by it and probably a little bit in denial of it. It probably helped that there wasn’t much on the Internet as well, it can be a real rabbit hole! Having said that, there is a shed load of information about MS online and the vast majority of it is really useful and helpful.
Good luck, and fingers crossed for you
