I’m sorry to hear about your health problems.
Very many (reasonable!) questions, but unfortunately very few firm answers.
Firstly, I think it’s absolute nonsense that your second episode can’t be a relapse, because the first one wasn’t treated!
None of my relapses have ever been treated - although, in fairness, that’s probably because most of them were before I was diagnosed. Unfortunately, that’s not the same as saying I haven’t had any - not the same at all.
It can happen that early relapses “don’t count” because they weren’t clinically verified by anyone. I was certainly in that position when I was being diagnosed. With hindsight, I could clearly recall earlier episodes, and even give a good approximation of the dates. But because I had rather recklessly or naively never been to the doctor about them, I had no objective evidence. There was no suggestion that my accounts of earlier episodes weren’t believed - I’m sure they accepted they did happen, just as I’d said. But diagnostically, patient self-reporting won’t do, even if the patient seems a good and reliable witness. There is simply no independent evidence.
But this wasn’t true in your case, because you did go to the doctor, and not only that, but you were scanned promptly, and evidence found. So they are NOT relying on your uncorroborated say-so. That was definitely a first attack - in fact, because a difference in age of the lesions was detectable, it is effectively proof of at least TWO attacks - one of which you might not have noticed, because demyelination, surprisingly, does not always cause symptoms.
But “treatment” and “evidence” are two completely separate things. If a decision was made not to offer treatment (or it was offered, but you declined), it wouldn’t follow that you didn’t really have the attack! That’s crazy logic! Treatment is a response to evidence, it isn’t THE evidence! On that basis, I don’t have MS, because I’ve never had treatment (Yeah, right…I wish!)
So something wrong here, I feel - or perhaps they just haven’t explained very well, leading to a misunderstanding? Because the other thing that would be a barrier to counting your attacks as “two” would be they weren’t far enough apart. To count as a separate relapse, any "new"episode has to be at least 30 after the last, and that means finish-to-start, not start-to-start.
So if your initial episode was only about five weeks ago, and lasted - oh, about a fortnight, shall we say - and now you’re having more of the same, you’ll see there almost certainly haven’t been 30 clear days between the two events, so they’ll be treated as part of the same. To me, that provides a much better explanation of why it can’t count as a new relapse than: “treated v. not treated”, so I’m not sure if the message has just got a bit garbled in the telling!
Actually, no, MS (if that is what it’s confirmed to be), is not “genetic” - at least, not in the way most people understand it - i.e. hereditary. There are (at least) a few dozen genes now shown to be influential in someone’s risk of getting MS, but there is no single MS gene, and even people having a large number of the known genetic risk factors do not necessarily get MS. If it was purely genetic, you’d expect identical twins - who share the same genes - always either both to have it, or neither. In fact, where one twin has it, there’s only about a 1/3 risk the other also will - so a 2/3 chance they won’t! Genes are certainly important, but can’t possibly be the whole story. There has to be at least one environmental factor, but although numerous candidates have been suggested, none has ever been proved!
There are many anecdotal reports of stress being linked to relapses, and some people believe it plays a part in the development of the disease itself. But again, there’s very little hard evidence in support of this - partly because it’s so difficult to measure. How can you tell if person A’s stress is equal to person B’s, given that we all respond to stress in different ways, and some things that are extremely stressful for one person might be water off a duck’s back to another? Stress is a very hard thing to measure under lab conditions, because it’s so subjective. So it could be relevant, BUT the jury’s out. In general, most people with MS agree that stress exacerbates existing symptoms, but it’s less clear whether it can actually induce a relapse, let alone the disease itself.
I have had extremely stressful times, including a very traumatic bereavement and related legal action, compulsory redundancy after more than 20 years, and so on. None of these apparently triggered a relapse. Other times I’ve just been chugging along, nothing out of the ordinary, and suddenly…BAM! So they’re a bit of a force of nature, and my personal belief is it’s futile to try to work out what you did or didn’t do to cause them. It’s human nature to try to look for patterns of cause and effect, but I’m not sure we influence our own MS any more than we influence the weather. Never beat yourself up for “causing” a relapse yourself - there’s no convincing evidence.
How much better can you get, and over what time period? How long is a piece of string? Prognosis for early attacks is usually good, with most people experiencing a significant recovery, and some a perfect one. Timescale is hugely variable, however, ranging from a few days to months (and there is no test that can predict). It ends up being wait-and-see.
When will you be diagnosed? When they’re satisfied you’ve had at least two distinct attacks, AND all other causes have been eliminated (there are other possible causes of demyelination, but they tend to be much rarer).
What should you discuss with the neurologist? No fixed rules - stick to what you really want to know. Obviously report any new issues or developments. You may want to ask how close you are to a diagnosis, and what the remaining uncertainty is.
You may want to raise the possibility of treatment (not steroids, but disease modifying drugs), although I’m not sure these will be on the table without a firm diagnosis - you may just want to put out some feelers, to see what the attitude is.