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Seeing consultant next week - advice please!!

Hi all,

As title says I’m seeing consultant next week and could do with some advice please from you lovely people if that’s ok. I’ve read loads of posts on here and you all seem so kind and helpful sharing your experiences.

In a nutshell was diagnosed 10 years ago when I was 40 and up to last summer had only had one relapse so guess I was lucky as the relapse was a good 8 years ago.

Moved here (Norfolk) from Surrey 4 years ago and didn’t register with anybody up here to do with MS as to be honest I didn’t think about it (big mistake, lesson learned!!)

Anyway had an appointment with GP last August who made a referral to NNUH where in October I had an MRI scan and saw a registrar. By the time I saw him I could only walk a dozen paces before I had to stop. He looked at scan and was surprised at how poor my mobility was after looking at the scan. Anyway he prescribed a 5 day course is steroids (500mg per day) which got me a bit more mobile. However I didn’t really improve much more and now I’m back to barely being able to walk again.

Have seen the MS nurse who has said it is a time thing which I do know but surely I should not be going backwards again?? I have a continence advisor I see regularly and saw a physiotherapist once who gave me an exercise sheet but nothing is really doing the trick. I’ve googled til I’m blue in the face and unfortunately seem to have a lot of the symptoms - probably because I’ve got away Scott free for so long!!!

Symptoms I have are urgency when needing to go to the loo, totally numb from the waist down and when I walk its like my legs have got lead weights on them (bizarrely it’s worse when I put shoes on), fingers are numb too and I’m getting the infamous MS hug too intermittently. On a good day I can walk up the stairs without too much trouble, on a bad day I have to haul myself up and my feet bang on every step on the way!!!

Now I can put up with most of it but I really need to try and get a bit mobile again as I rarely leave the house and that is getting me down. Luckily I work from home so have no travelling to do else I would be doomed.

When I was in Surrey and saw the consultant he said if I ever needed drugs it would not be a problem even though they are expensive. I don’t know how the land lies here with drugs and budgets.

Anyway, sorry for the long post but what I really wanted to ask was should I be asking for some sort of medication to try and sort me out?? Home life isn’t fab to be honest and my husband seems to think they can give me something and all will be sorted. Now I know it doesn’t work like that and I may or may not get better but should I at least be asking them to try me on stuff?? To be honest I don’t have much confidence if I see the registrar as last time he poked the bottom of my feet with a pin and I was trying to to explain that although my feet are numb I could feel it. Shouldn’t I see a consultant at least at the beginning?

Would you push for something if you were me (I’m not a very pushy person to be honest and just tend to say oh ok!)

Once again thanks for any advice or tbought you may have and sorry the post is so long.

Boo

Would I push for a disease-modifying drug if I were you? Yes, Boo, I would. Particularly as this latest serious relapse of yours is being a bit stubborn, and it seems clear that, if your MS was being benign, it sure isn’t now.

DMDs won’t make you ‘well’ - steroids and time are the only things that will fix a bad relapse to the extent that it can be fixed - but they do improve a person’s chances of avoiding the next relapse and the one after that.

I am sorry that your OH is not being as supportive as you might wish. He probably is knocked for six by the recent worsening in your health, and people process this kind of bad stuff in their own, not always very helpful, way and at their own pace. I hope that, when he has come to terms with the fact that this isn’t all going to go away, that he will be able to meet you half-way a bit more.

Good luck.

Alison

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Dunno much about DMDs,but I do know about short ter- -emo-y -oss.May I humbly suggest you take somebody to help remember what’s said,or a dictaphone,or both.

Good luck,

Wb

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Thank you both for your replies. I did ask the MS nurse if I could perhaps have another course of steroids to see if I could improve further still but she said no as they are too dangerous to have too often. TBH I think I would rather put up with the danger and get a bit of mobility back. I know the DMD’s won’t make me better but if they keep it at bay for a bit… what do you reckon the chances are of another dose of steroids?

OH is fed up I think with me being “ill” as 5 years ago I had cancer. I try to carry on as normal by going to work and doing the chores so as it doesn’t affect everyone else but it is so frustrating as everything takes a million times longer and I am so unsteady. The way things are at the mo I can’t see him meeting me half way so this is one battle I’ve got to sort out myself.

What I could really do with I reckon is some online counselling to talk about how I feel as I can’t say how I feel to the MS nurse as OH said last time I just moaned. I actually didn’t moan, I was just explaining my symptoms to her and how frustrating I find them. I don’t talk about it at home as I don’t want to worry my 11 year old and don’t want everyone to think I’m a moaner. BUT it does get you down when you’re stuck indoors all the time.

Bloomin’ heck I might end upcoming on here moaning , I mean explaining, in which case you’ll have to tell me to button it!!!

I’ll let you know how I get on and if anybody else has any thoughts do please share them.

Thanks again.

Boo

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You let off as much steam as you want no one here will object.

The way I understand it is this…if you are RR and have more than two relapses in any two year period then you qualify for DMDs, less that that and you are left to your own devices with only symptomatic medication. If you are SP or PP then there is no medication as yet to treat your MS, again only symptomatic.

If I’m wrong about the two year, two relapses timescale someone please correct me

Make yourself a list of things to ask at your next appointment, if you’re anything like me you will forget unless you have it written down.

Good luck

Jan x

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Thank Jan, to be honest I am assuming I have RR at the moment, when does it change? I really have no idea about all this and the more I read the more confused I get!!! Think I’ll start by writing my symptoms down, I will honestly sound like Dot Cotton by the time I’ve finished.

hi boo

so sorry to hear what a hard time you are having.

you must get a referral to a neurology consultant who specialises in ms.

although you don’t like to be pushy, this is your health at stake so you must push!!

steroids make you feel great but long term use can lead to osteoporosis which is the last thing you need.

you need to be able to talk to someone because it sounds like you are becoming overwhelmed.

could you talk to your gp?

try the ms helpline 0800 800 800?

your husband might come round once he sees that you are getting things done for yourself.

take care, be selfish for a while (it’s ok to do that)

carole xx

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hi boo,

you’ve REALLY been through the mill, health wise, haven’t you? dealing with cancer as well. you are most definitely NOT moaning! come on here to say what YOU need to, leave whatever length post you want, there’s no need to apologise.

as for the idea that you moaned to your MS nurse, that’s bloody ridiculous! the whole point of seeing your medics, any of them, is to talk through what’s happening to you. quite frankly, when your MS is really misbehaving, it’s a little difficult to put a positive ‘spin’ on it. i’d definitely suggest taking someone other than your OH with you, if possible, as his comment about you ‘moaning’ suggests that he might make you feel that you have to play down your symptoms, which would be a very bad idea, as it might mean that you don’t get the treatment you need. if he’s the only way to get to your app. perhaps you could suggest that he goes for a coffee?! it’s preferable to have someone with you when seeing your doc. or MS nurse, as it’s very easy to miss information. the idea from woblyboy of taking a dictaphone was a really good one. if you do have someone in with you, it needs to be someone, that you can talk feely in front of. i always take a list of symptoms, questions and concerns with me, so i don’t forget anything. have a list of any meds you take too. your hubby might benefit from being directed to this site, so he can learn about MS, he could use the forum too, perhaps, both to learn how he can support you AND for support for himself.

do come here whenever you need to get something off your chest, or when you need some support, it’s full of people who understand what you’re dealing with. is you appointment definitely with the registrar you saw before? if it’s not certain, try speaking to you MS nurse or the medical secretary who deals with the correspondence, so you can find out what’s going on. perhaps you could phone and voice your concerns with your MS nurse (again, a list of the points you want to get through is helpful).

take care,

wendy xx

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Hope you get things sorted and get started on meds if thats what will help. i,too have had ms for seven years and so far have been very lucky .Had a third mri in december with the possibility of starting dmd’s, not sure of results as yet as I have had no word back from neuro. Its a daunting thing this ms of ours. Take care,mary

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Chance of another dose of steroids so soon? No much chance. As I understand it, ‘more is more’ doesn’t work with high dose blasts of steroids. More of them too soon just loads you with extra risks but with little chance of extra benefit. No point in that. Save them for next time (and I hope there won’t be a next time).

If your OH is fed up with you being ill, I’m sure he’s not the only one - you’re probably getting a bit tired of it yourself. I can well see how trying to act like a person who doesn’t have MS can feel like an easy option for a quiet life. But it isn’t really sustainable longer term, and it probably isn’t helping either of you much with the difficult task of figuring out how you jointly accommodate the unwelcome guest - MS - into your joint lives. This is all very tough stuff. I agree with you that counselling might help you to tease out some of the strands and navigate your way through. Face-to-face would be better, but I think you said earlier that getting out of the house isn’t easy. Perhaps going to some trouble to get out to see a counsellor would help make the point that there is a job of work to be done here and that you are serious about tackling it. Is that a possibility?

Anyway, good luck.

Alison

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Alison, sorry I missed your comment. OH probably won’t see a counsellor with me. I’ve got to try and sort this myself as there is so much stuff going on in the background and I am conscious of everything I do. Sorry if this sounds negative but not having to good day LOL.

Pigpen I did think I was seeing a neurologist, it was only when I got there he introduced himself as a registrar!!

2blackcats, thanks for your advice. It’s all up in the air now at the moment, I may be going on my own…

Marydan I’m so glad you’ve been lucky so far. Long may it continue for you.

Thank you all for your encouragement.

Evening all (in my very best Dixon of Dock Green voice LOL)

Just a quick update. Saw another registrar today and she was lovely. Much better than the one I saw in October. Did a really thorough examination, is going to prescribe me Baclofen and see if I can be added to a trial that has just started for a mobility drug. Also taken bloods but I can’t remember what for. So will wait a couple of days and if I don’t hear from my pharmacy will chase them up.

So I feel quite positive that perhaps my mobility may improve. Today it’s been non existent and there were no bloody chairs at the hospital so once inside I took my shoes off and virtually slid my feet across the floor, people probably thought I was mental!!!

Just need to reduce my stress levels now as I’m sure that’s not helping the situation.

Boo

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