Oh Julie, I do feel for you - it’s not unreasonable to know whether you have been diagnosed or not!
Even if the answer’s “no”, it would be nice if they would unambiguously tell you that, as you’d still be left with more questions than answers (like: “What the heck is it then?”), but at least you’d be clear about your diagnostic status.
I’ve been diagnosed over five years, and I am having trouble understanding the conflicting answers you were getting.
Your initial “diagnosis” does sound as if it may have been a bit premature, as they usually need proof of more than one attack for a confirmed diagnosis. It is not common to be diagnosed after only one incident - and that quite mild. Usually it’s a case of playing the waiting game unless or until anything else happens, which enables a firm diagnosis to be made.
But here’s the confusing part: you’ve received a letter indicating that new lesions were to be expected! Usually, you would not “expect” the patient to have new lesions unless it’s known and accepted they have a demyelinating disease - of which the commonest is MS.
So I do not understand why the new lesions are being treated as in line with expectations, if there’s no agreement you have MS in the first place.
What does your GP have to say about all this - other than referring you to the pain clinic? They are the person who should be coordinating your specialist care (from the neuros), and resolving any contradictions or unanswered questions, especially anything as basic as: “What has this patient been diagnosed with?”
It’s not irrelevant, because although it’s incurable, there might be important implications for you personally, such as being able to claim if you have a critical illness policy, and being eligible for drugs that might help to slow it down.
Now I personally do not think the latter are universally appropriate, as the benefit you get depends how active your disease is. Until recently, you had to have at least two attacks in any two years to qualify, but I think rules on that are less stringent now. But regardless whether these drugs do or don’t turn out to be the best path for you, it’s important to know what you are dealing with, so you have the option to consider them. Considering does not mean you have to say yes, but without a diagnosis, you’re being deprived of even your chance to consider.
Personally, I would pursue things with your GP, initially, and ask: “Look, what does this mean, that new lesions were ‘expected’? What is he saying I’ve got?”
You should be able to get a clear answer about whether you are diagnosed with MS, and, if so, why you haven’t had a discussion about treatment options, access to an MS nurse, and all the other hoopla that usually goes with it - though with hindsight, I didn’t get those either - I did get a firm diagnosis, but was left to research treatment options by myself, and report back what I’d decided. What I didn’t know back then was somebody was supposed to have talked me through the options. It seems everyone was under the impression somebody else had already done it, so nobody gave me the talk!
I’m not moaning, because luckily, I was OK researching by myself. But I only realised a long time afterwards that’s probably not quite how it’s meant to work - so mistakes and oversights do happen.