Not for the first time, I’m hopping mad to read the write-up of my latest neuro consultation. I can only assume I think I’m being up-front and honest about how I’m affected, but it’s coming out as: “I’m fine!”
Apparently, apart from painful feet and slight urinary hesitancy, I have “no other significant symptoms”.
Apart from spending nearly half of every day asleep, being too weak to fight my way out of a wet paper bag, and feeling as if I’ve got flu’ ALL day, every day, would that be?
Also, apparently, I agreed to consider taking both amitriptyline and gabapentin. I thought my answer had been “no thank you”, but I must have been too polite about it, because apparently it has come out as: “OK, I’ll think about it”. I’ve thought about it - the answer’s still no.
So now my GP’s been asked for her cooperation in prescribing stuff I’ve expressed no interest in at all. I don’t think I have nerve pain to any significant extent (my pain is musculo-skeletal), so I don’t want to take a load of stuff for a problem I’ve not got. It’s bad enough I’m taking seven pills a day (not including supplements) for those problems I DO have.
It’s OK, my GP won’t go ahead and just foist them on me without checking first, but why should she have been approached at all, about prescribing things I’d said no to? I suppose the only advantage might be that if things change, and I do suddenly decide I want them, I might be able to bypass another trip to the hospital, and just ask my GP to prescribe, “as per my neuro’s suggestion”. She’s always very reticent to do anything without the hospital’s say-so, but if she’s had a letter from them, suggesting she prescribe, she can’t very well claim it’s beyond her remit, can she?
I feel extremely reluctant about amitriptyline in particular. Not because of the “stigma” of it being an anti-depressant - although it is. I know it’s prescribed in much lower doses for MS. BUT I’ve had an extremely negative and harrowing experience of ADs in the past - I’ve tried almost every type: SSRIs, SNRIs, tricyclics, and had distressing side-effects with all of them. To the point I’m now really negative about touching anything badged as an “anti-depressant”, even if it’s for completely unrelated reasons.
I know that if my neuro has a wrong idea about how I feel on a day-to-day basis, that can only really be due to me not making things clear. But I certainly don’t feel as if I have “no other significant symptoms”. I wake up every morning feeling as if I was run over by God-knows-what. I’ve just started a college course one afternoon a week, and was so exhausted last week, that after having dinner, I went to bed leaving the lights on all night, and the hotwater (was only supposed to be on for an hour, for a bath)! This week, I remembered the lights and boiler, but forgot my pills, so was up again 20 minutes later. Feeling this shattered, after just three hours at college, isn’t really “no significant symptoms”, is it? I wonder how bad things have to be, before they’re deemed to be having a “significant” effect on life?
I’m sorry to sound whiny - I always try to remember they do see many more serious cases, and perhaps that’s why his perspective on what is “significant” is rather different from mine.
I did think he was a “nice” neuro, so I had no problems in the consultation itself. It’s just that now I see the write-up, I think he has absolutely no idea how rough I feel most of the time. The whole thing reads as if nothing much the matter, and, albeit unintentionally, that must be the impression I give. I’ve always advised others - and followed it myself - to stick to the main points, and not detail every little symptom, because there won’t be time. But perhaps I really do need to go in with a list a yard long, to avoid being recorded as: “nothing significant the matter”.