Im curious, Ive read lots of msers advising that new symptoms of possible ms should be reported, also any deterioration in existing symptoms.
I always assumed I should write them down and inform the neuro on my next visit. I have rung the ms nurse a couple of times in the past 11 years however by the time I appeared at the relapse clinic all righted itself. Now I feel I should cope alone as lots of other older msers do, or is it important that our gp's know how we deal with each problem. Because there is no cure Ive just tried to find ways of dealing with situations, advice from other msers.
I dont routinely write things down for neuro unless I feel an issue is ongoing and I may need her advice, referral, new med. Once in a flood I organise myself to type out a list but not always. I only go for review appt to keep on her books because I once didnt go for years as I refused all meds, waited for recovery from relapse and used complementary therapies. Then when I urgently needed an appointment I was treated as a new patient and was put on a waiting list - that is until I wrote to him personally and asked him to see me urgently, which he did. A great neuro because he was an excellent people person. He is retired now.
I think its a bit much of a nuisance to be bothering my GP with stuff unless I am seeing her about something I need her assistance with. As you said, we have it and we find ways of coping with it. Having said that maybe that some people need the reassurance of seeing a GP either in the early stages or even later and I am not knocking how they use this as a coping tool.
If I have something new happening, I usually go to the GP first, in case it isn't the MS. There have been a couple of things that were not MS and were dealt with by the GP (always a pleasant surprise to have something "normal" wrong with you). This stupid disease manifests itself in all sorts of different ways, but I think it's important not to be blinkered by it and to bear in mind that you can have other things wrong with you too.
I go and see my GP if I get a new symptom. I do this purely because when I was newly diagnosed I read that the leading cause of death for MSers is assuming that a symptom is because of their MS when it isn't. What's worse is that the symptom is often because of something that would have been treatable if caught earlier.
To date, my GPs have been pretty useless though! The last time I went I was told, "It can't be your MS" followed immediately by, "I don't know what else it could be" followed immediately by, "You know more about MS than I do." I like to think (hope?!) that if it wasn't my MS they would catch it though. After all, they are a lot better at recognising non-MS things than MS things!
I hate to bother my gp although saying that when I suffered constant back pain I had to go in the end thinking it was to do with my gait having previously had neurophysio. My mobility had slowed to a shuffle. Then to my astonishment I found after x-ray I had spine fractures not related to my ms in any way, so I agree it is important to work out what is ms related and what is not. We are really expert patients when it comes to our ms I feel in time once we know our rhythm so to speak.
I was very curious to know especially when it comes to recording events as I often forget when I see neuro about symptoms then wish Id recorded details. Sometimes I could kick myself when I get told: you seem to be doing fine - then hear other msers with similar symptoms have them recorded giving a bigger picture of the nature of their ms.
Rightly or wrongly, I play it the way you do, Bren.
I don’t keep phoning or going to the doctor. I accept I have MS, and that this means certain things are going to play up sometimes, or even quite a lot of things, a lot of the time.
I honestly think I’d be constantly at the doctor’s, if I went in just to “register” the occurrence, any time I noticed anything.
I’m not talking about seriously disability, or agonising pain, here. I suppose if either of those struck, I’d have no choice but to go.
But just the everyday stuff that’s annoying, without being disabling, or uncomfortable, without being agony. I don’t go to the doc’s about all of that, preferring just to get on with it.
I don’t believe there’s anything the doctor could offer anyway, that would make it totally as if I didn’t have MS. I think some impact on quality of life is inevitable. As long as it stays at “manageable”, rather than “desperate”, I don’t really feel the urge to report to the doctor all the time.
I don’t contact my GP very often, but if I think there is a need, I do. Remember the GP gets a budget for every person on his books, wither he/she sees you once a year, a hundred times, or never, in addition for every person diagnosed with a chronic illness, which “MS” is one of, your GP gets extra budget.
So never feel guilty for contacting/seeing your GP.
Just a thought, when did you last see a GP, driving around in a ten year old budget car, no they will be driving a current model, of the highest spec. They do very nicely, thank you very much.
I. El. (Eng). (Rtd).
I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.
I don't bother my GP because I've learnt over the years that, with all the research I've done into various things, I know more about whatever's wrong than they do. When the spasticity in my legs got worse, I sat and thought about what I'd been doing at the time it started. It coinsided with me having porridge for breakfast, even though I'd bought gluten-free. I stopped having porridge and it went away. I'm currently suffering with fatigue which has got worse since we put the central heating on, so now the heating is turned down low and I'm dressed for summer, even though it's winter. I'm sure people must think we have the heating turned up to tropical! Beats being put on some "let's see if this helps" prescription drug any day.
I didnt know the gp's got extra budget for us. That is probably why as Chris says, theyre never in old rust bucket of cars. Ours have sports cars all parked in the disabled bays because there is nowhere else to park!
I agree, I only go when I feel there is something which needs an explanation and perhaps further investigation. MS is such a pain though bringing on weird and wonderful symptoms which over the years we either become familiar with or need that extra bit of help to cope daily if they are more disabling than expected.
you are a very wise lot. What would I do without you.