Thanks to all who offered support and sympathy yesterday, about my hospital phobia!
As there was only one neuro on duty, my appointment was delayed by over an hour, which is not great for anybody phobic. I was there early, too, so waited over 90 minutes in total.
I saw the same chap as last time, who is very nice and eager-to-please.
Had a bit of a chat about this and that. The upshot, as usual, is we’re not going to do anything!
We did talk about DMDs, and he said he usually has a very low threshold for prescribing them. However, he didn’t feel drawn to, in my case, because looking through my notes, he agreed with me there is a very real possibility I may have had MS for up to ten or twenty years BEFORE being diagnosed. In the light of that, and of how well I’m still doing without treatment, he was very disinclined to meddle, which suits me very well too.
He said that relapse rate is highest in the early years, and as I may already have had it for 10-20 years, my risk is diminishing, not increasing. But interestingly, he did NOT think I’m already SPMS. He said that if it was going to “turn secondary”, it would have done so already, if not years ago! Isn’t that interesting?
So technically, I am still RRMS, but presently deemed to have a “low to zero” relapse rate, which means they don’t want to interfere. That is very good news, because I’d guessed that if I wasn’t relapsing any more, it must be because I’m already secondary. Apparently that is not necessarily the case, and you can pass peak relapse activity, without necessarily converting to secondary.
We did talk about my anxiety (and appointment phobia), and he said that anti-fatigue medications (amantadine, modafinil) were probably contra-indicated in my case, because, as stimulants, they might make me more anxious. I can see that it’s probably pretty perverse to take tranquilisers AND stimulants, both at the same time. He wasn’t at all worried about the tranquiliser use - which I have raised slightly, for the spasticity too. He said I seemed to show great insight into my condition, and he was happy that I am only making necessary tweaks, and not abusing any medication, as I’m still on a very low dose (I did not tell him about the two G&Ts, the prosecco and the 1/2 bottle of red wine I had on top last week - but if it was going to kill me or render me senseless, I’m sure it already would have - I made my way up two flights of stairs without incident, but did have trouble inserting the key in the lock, which made me start giggling, but wasn’t dangerous).
And he was very, very nice about the phobia, to the point of admitting he is not always on the professional side of the desk, and he is a rather anxious patient too! Funny to think of a neuro being scared of hopitals, but he didn’t think I was nuts or anything, because he’s experienced it himself. (Isn’t a pity you can’t date your neuro? I was starting to think: “This guy totally gets me! Wonder if he’s free?”) There is a saying that doctors make the worst patients - probably because they’re a little too familiar with all the horrible things that can go wrong!
So we’ve agreed that as my condition seems quite stable, with only a little blip here and there, which he does NOT think justifies DMDs, we could leave it a year, next time. He said to book it for six months anyway, but if it gets nearer the time, and nothing worse has happened, ring and postpone it to the Autumn.
Won’t that be better?
Phew, I’m so glad it’s over. As predicted, I came home absolutely starving, after being off my food the past few days! But sadly, because my appointment was so late, I didn’t have time to stop off at Sainsbury’s, and buy something huge and chocolatey. What a shame.
Tina
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