Trying to explain concern that neurologist wont give dmdhasn’tly 1 significant relapse in 2 years. Apparently I’m stressing over nothing and should wait and see. I want to be ready to convince him and want help to work out how. I could cheerfully kill oh or just finish myself off and save everone the trouble. Ive been doing really well but clearly oh hasnt
My little spaniel wouldn’t manage without me. She and my other dogs keep me going
Im sure the NICE guidelines state doctors can prescribe DMD’s once you have a diagnosis, irrespective of how many relapses in a certain timescale! When is your appointment? I was diagnosed 10 years ago but waiting until Aug to see my consultant to discuss my choices as I’m not on DMD’s yet either. I haven’t been seen by my consultant in a year and a half and I’ve only got this appointment as I asked my gp to refer me. As I had a long wait to see him we planned for an MRI prior to my appointment. But its only 3 weeks away & I have tried calling the consultants secretary 3 or 4 times already. Will try again when we’re back from our hold!
You could be harsh and tell him that each relapse causes, and leaves some degree of damage which leads to increased disability which means he will have to do more. He might not mind that but it’s cruel for you when there is so much out there to prevent it happening.
What does he want to wait and see for? If that one relapse happens that floors you for months and might leave you with some of the worst and permanent symptoms of MS? I’m sure he’s a wonderful husband but he needs some home truths about this. Read him a few posts from the Carer’s board if he needs convincing about what can happen.
I’ve frightened myself now! Good luck.
Those closest to us have their own hard paths to follow as they get their heads around the arrival of MS in the family with all it might mean for hopes and plans for the future.
For sure, it can feel frustrating when they do not see things exactly the way we do, but it is worth remembering that the frustration works both ways - they can be every bit as cheesed off that we don’t see it their way!
This sounds like a opportunity for a discussion of the ‘uncork a decent bottle and sit down for a strictly-no-shouting-or-criticism’ sort - a mutual explore of how you are both dealing with all this MS rubbish and how you can best support each other. For sure, at the end of the day you are the one with MS, and treatment decisions are yours to make. But you’re in this together for the long haul - even when you have to agree to differ, it is good to do that on the basis of a good understanding of the other’s position.
And if your OH remains in any doubt of how brutal an enemy MS is, direct him to a read of the Carer’s board, as Val suggests. He definitely will need a drink after that.
The Professor of Neurology at Barts & London has been arguing the case for early and effective treatment for years. You can find loads of information on the blog to support this approach.
Frankly, I think being denied early treatment is immoral.
I assume he only means “wait and see” if it’s an issue, not “wait and see” before starting any treatment?
He may have a point.
I had the opposite problem, but in a way similar. I didn’t want DMDs, and was stressing myself stupid over how to tell the neuro, and the expected ensuing confrontation.
Instead, he said: “Good girl, that’s what I’d have done!” So sometimes it doesn’t help to rehearse crisis scenarios where you don’t get the outcome you wanted. I couldn’t believe I’d made myself sick (literally!) worrying about the discussion, only to find we were in complete agreement, and there was no argument or confrontation whatsoever.
I’m not arguing either for or against DMDs. I’m just suggesting not to make yourself ill like I did over what might or might not be said at the consultation. You might find you’re on completely the same wavelength, and there’s no issue after all.
Good grief! OH’s are sent to try us!
Mine doesn’t do "strictly-no-shouting-or-criticism’ exploration. He criticises pretty much everything I do/don’t do with regard to my ‘Probable MS’ (and quite a lot of other stuff as well). I should be seeing a Doctor about [pick a symptom] and getting it sorted out - Hello? Who are these people who keep nicking my blood, x-raying me, sticking me inside MRI Scanners, studying my brain and spine, and prescribing some pretty weird meds for the past 2 years? Figments of my imagination?
He has a possible trapped nerve issue and is having a major hissy fit that the physio dept haven’t received the referral form I sent (for physio that he doesn’t want to have in the first place because its (according to him) a waste of time ‘They’ should be Doing Something) and was refusing to have an x-ray of his neck because people didn’t take him seriously!? Really? Talk about cutting off your nose to spite your face! Explaining that - without the X-ray there was no way the mysterious ‘They’ would make a diagnosis of any kind, and that he should run with the Physio in the meantime so at a later date he could say “Tried it - didn’t work” was exhausting. He ‘KNOWS’ what is wrong - he’s been on the internet you see and has read all about ‘It’, some Doctor who has spent how ever many years getting qualified doesn’t know jack s**t.
He sulks and/or throws screaming temper tantrums that a 3 year old would be proud of. Latest at 11.30 pm on Saturday night when he decided to change/top up the water in the fish-tank and I didn’t hear him (because I was asleep courtesy of a handful of meds) - rudely awaked by him smashing everything off the bedside table and screaming at me - the neighbours 3 doors away could hear him screaming abuse at me, slamming doors and smashing things. I think I might set up web-cams around the house so I can video him and show him what a complete **** he is, and why he needs to book onto an anger management course pronto! I’m no angel - far from it, I thoroughly live up to my Taurean/Red Head/Viking heritage - but I already attend an anger management course, its called Taekwondo.
Fortunately (for the OH) my inner Buddhist prevents me from welting him with a cast iron frying pan (a friend in the US actually did this to her 2nd, now ex-husband) because I know its That Time of Year again! I am about to go on holiday and (as the threats to kill himself if I go on holiday failed 3 years on the trot), he now resorts to hissy fits and being as unpleasant as he possibly can in the couple of months running up to my annual 5 day break with my mates, really? You have a 2 week holiday with your mates, but you don’t want me to go on holiday with my mates - so being sulky and throwing tantrums is really going to make me want to say “Stuff the holiday, I’ll stay here with you instead.” FACEPALM!!
Apologies for hi-jacking your post for a rant JanetV.
Ex-husband as in ‘no longer married to her’ or ex-husband as in ‘see Exhibit A - frying pan’?
Both! She put him in hospital, was locked up in the local prison and was only let out because he refused to stand up in court or even admit that he had been hospitalised by a 5ft tall woman who only weighed 100 lb at her heaviest! (He was 6 ft 3 and weighed around 15 stone old money). Lovely woman.
I have to agree with you Tina.
I know we both have the same neuro and I had a similar conversation with him.
I have been on both Copaxone and Rebif since diagnosis in 2005 with no success. Relapses still happened while I was on them. Before I decided to stop DMDs I asked him if he could tell me which patients had the best outcome those on DMDs or those not on them and he said the outcome is about the same. At least he is honest with us eh?
Take care Janet and you keep doing well.
Well, if you say so. Lucky woman, certainly, to get away with the kind of domestic violence that can easily end (whether this was the intention or not) in the morgue for one party and the four walls of the prison cell for the other.
I was purposely trying not to get into the pros and cons of DMDs argument - or the characteristics of any one neuro.
I was just trying to make the point that it can be a waste of precious energy to try to prepare for a completely hypothetical battle that may never materialise. Although Janet is seeking a different outcome, her neuro, like mine (ours?), may surprise her, and agree to what she wants without even blinking!
I think it’s sometimes almost harder to be the OH of a person with MS (or in fact any other disability/illness/degenerative condition etc) rather than the PWMS. Often my husband just can’t get it right no matter what he says. If he tries to come up with a solution to whatever problem I’m worrying over, I tell him he’s wrong. If he doesn’t try and help with what ever the issue is, he’s also wrong. He doesn’t understand exactly what I experience, and he doesn’t have the same knowledge of MS that I have. However, he tries. He comes with me to appointments, he has a go at helping when I worry about things, he treats MS like its something that we both have, and of course he is stuck with it too. Yes, he’s often wrong about MS related things and try as hard as he can he can’t actually know what the symptoms (or side effects from treatments) are like, but I know he loves me and he wants to help. Just recently during a relapse, he came home from the butchers in our village and told me the butcher was happy that I was feeling a bit better! You have to love a man who talks about how you are with the guys in the gym, his friends, his family, even the butcher. Even when he is wrong a lot of the time.
I rather like Alison’s suggestion of uncork a decent bottle and talk about it! Or just uncork a decent bottle and share it.
With regard to the ‘wait and see’ approach. it is bullshit. it is inaction verging on the negligent.
those with RRMS (either confirmed or suspected) will likely have symptoms which provoked them into seeking out a neurologist in the first place.
this neurologist then has the authority to request further examinations (MRI, LP etc) as well as perform some rudimentary tests to determine all likelihood of MS being the underlying cause.
the results of these things and only these things, should be enough to enable the patient, if THEY so wished, to elect to receive DMDs.
waiting for someone’s world to collapse before professional (so called) health providers might respond REACTIVELY is utterly contemptible. If you have it in your mind to indulge whatever it might take to safeguard your future health and thus quality of life, then screw it… lie! lie to your neurologist by telling these apathetic arseholes what they need to hear so you can finally be allowed to do what is best for you and actually be PROACTIVE about the situation you find yourself in.
and one other thing… we all know that MS, its age of onset, its level of severity, its range of symptoms, every last damn thing about it, is completely variable and personal to the individual. and so what sort of logic would allow a comparison of people not on DMDs against those who are, to make a grand assessment of all DMD’s efficacy? again, complete bullshit.
DMDs will not stop relapses, will not stop disability. they are not a cure. they MIGHT reduce the frequency of relapses and the progression of disability but they will stop nothing. However, they are something worth doing, even if the odds of a favourable outcome are slim.
sorry. rant over. but those people employed to help, but then do not, really phuck me right off. (blue language for emphasis.)
Well today has been an odd one. I think I wore myself out yesterday doing normal living stuff and then with emotional argument on top. I slept most of the day. OH trying to be kind, but we need to have a proper conversation still.
I know its hard for him too, I really do. It’s hard for me to understand why I can accept my need for a couple of little aids and that he can’t. Bizarrely (in my mind) he hates me using my cutlery with big handles. I manage Iif we are eating out, but its so much easier to use it at home. Saves me spilling it down me!
Whilst this relapse is going on I cant walk far without terrible weakness and exacerbated symptoms so I have a wheelchair on standby so I can for example have my regular shopping trips with my sister.
I think this is all just common sense and practical, as is being prepared in case I have to argue my corner. Ms specialist neuro appointments dont come along that often.
Thanks all again for your concern and help xx
fat fork handles and wheel chairs are not things to get a man’s knickers in a knot.
i am thinking two things: either you are thinking about such things too much (which is nice of you, but please stop it) or two, he has a serious dose of the denials.
if the latter is more likely, i think you might just want to give him time and space to reconcile this life with the one he thinks he might have preferred. do this by simply carrying on regardless.
people drive cars because they are unable to run a marathon to the shops each day. people use spanners and screw drivers because they do not have Popeye like strength. these common situations employ the exact same logic as you do, when you’re using chunky forks and wheeled chairs; therefore what’s the boggle?
you are doing your absolute best to carry on with the life you want to lead, whilst accepting a few tools to help you on your way. just like everyone else on the entire freaking planet.
Haha, Paolo, you always make me smile.
You are dead right and I have always been a stubborn cow so as usual I shall do exactly as I please and nothing that I am told to. I know he will get more accepting in time.
In the meantime I am laughing at the fork handles joke thinking of the two Ronnies
Thanks for the common sense
Plugs, 13 amps…