Hi,
Did you ever have a letter in black and white, saying you’d been diagnosed with MS? Because if you have been, there should certainly be a paper record. If you didn’t get a copy, your doctor should have, so it may be worth making a GP appointment, to see exactly what’s been said in the past about your diagnosis - i.e. whether it was “MS”, “probable MS”, “possible MS”, or something else.
What the neurologists never seem to explain, which I think is responsible for a lot of the confusion, is that there are strict evidential criteria for an MS diagnosis (called the McDonald Criteria, if you want to research further). These mean a person usually has to have at least two distinct episodes before diagnosis can be confirmed, even if they have the characteristic lesions, as it’s possible to have just a single attack, but never have another, which doesn’t satisfy the “multiple” aspect of muliple sclerosis.
Although I am not unhappy with my diagnostic process overall, this is certainly one aspect that would have benefited from greater clarity, as I had six brain lesions an at least one spinal cord lesion, and my neuro had talked to me about MS - so to my mind, I did have it. So I was baffled when his letter to my GP now appeared to be back-pedalling, not saying I did, in fact, have MS.
What I didn’t know at the time, and have only learnt from sites like this one, and other reputable MS sites, was the “two episodes” thing. It has to be two medically verified episodes, as well - they can’t take into account earlier attacks the patient reports, but which were never clinically investigated (e.g. because, like me, they assumed it was some bug or injury or other, and never bothered going to the doctor).
I’m sure my neuro did believe I’d had earlier episodes, but because neither he nor a colleague had ever directly witnessed them, he wasn’t able to say to a clinical standard of proof. I think this explains how he could be verbally confident I had MS, yet still not able to diagnose formally.
So I do wonder if similar has happened with you: all the signs are there, BUT it’s not known for sure if you’ve ever had more than one episode (it’s not one lesion per episode, so even having multiple lesions doesn’t mean they couldn’t all have been caused by a single attack).
Of course, no neuro would want to diagnose without seeing the pictures anyway, no matter how good or confident he is.
So I think the first step is to find out what your GP believes you’ve been diagnosed with, and take it from there. Even if you have on file a clear diagnosis of MS, it’s not automatic you would qualify for disease modifying drugs, as the usual rule is that you must have had two clinically significant relapses within two years. So again, we get back into this thing about how many attacks you’ve had, and when. If it’s not clear you’ve ever had more than one, let alone two in two years, not only are disease modifying drugs unlikely, but the diagnosis itself is dubious.
Although it’s another thing they don’t tell you, you do not have to have a lumbar puncture in order to be diagnosed - I didn’t. I declined because it’s an invasive procedure AND not always conclusive, so I could have had it, but still been no further forward. If it would have given me a definite yes/no answer, I might have reconsidered, but I wasn’t prepared to go through it with the risk it might not provide any useful evidence (a “normal” result cannot rule out MS). You might want to ask the neuro who’s proposing it what happens if the result is normal - i.e. what will you have gained?
Hope something I’ve said may shed some light,
Tina