Forum

Carer needs advise about relaps and neuro appointment.

Just wondering if it is usual or if a specialists mind if patients have someone go in with them to a consultation, especialy if they are in the middle of a bad relapse and dont know if they are coming or going. Talking about a 30 year old bloke here who thinks he has to face every thing on his own. Just thinking of another pair of ears really, prompting him if he forgets anything, there is quite a list. It’s at Walton and it’s is usualy so busy.

He saw a Polish neuro who was not an MS specialist a couple of weeks into the relaps, and the guy sent a letter to his GP saying it was his second relapse (which it was not) and ‘he could walk previously’ (which he couldn’t, and! had said so on his ESA form and to ATOS) but now could only walk 50 meter’s which he definately can’t. The letter itself just didnt make any sence and now with ATOS doing PIP as well as ESA, things like that really need to be acurate.

Since then he has just got worse and worse and now trembles and shakes all over, is really hot all the time and really thirsty. Plus he can hardly stand up at all now never mind walk 50 meters. He had a urine test to make sure he didn’t have an infection. :frowning:

Are these symptoms usual in a relaps, and is there any help with them especialy the tremmor ?

Sorry to go on but I’m worried sick about him and don’t want to ‘waste’ this rare appointment.

Hi Jash, It’s completely up to the patient if they want anyone in there with them. If they do, they are entitled to have that, but there may be issues with confidentiality, if your friend is in such a state that he cannot indicate clearly that he DOES request your presence. I.e. it has to be pretty clear it’s his choice, and you haven’t just invited yourself along. If there’s any doubt about whether he wants you there, you might find the answer is no. There is no such thing as a “typical” relapse - they can vary from quite minor - more of an annoyance, really - to completely incapacitating, and capable of putting someone in hospital. What’s more, they are not all the same. Having one bad one does not imply they’ll always be bad, but one mild one doesn’t mean they’ll all be mild, either. Both frequency and severity are unpredictable. I’m not altogether sure about MS causing thirst (although there doesn’t seem to be much it’s never caused). Is there a possibility there might be something else wrong? There have been a couple of cautionary tales on this forum just recently, about assuming everything’s always MS. People do get other stuff as well, unfortunately. Tina

Thanks for the reply Tina, it’s my son, and I am thinking of trying to persuade him to let one of us go in with him but just needed to know if it was usual or a good idea before I broach the subject with him.

Every thing else seems to be MS but I haven’t seen anything about thirst, and remember the people on here stressing ‘don’t assume everything is MS’. I have told him to make sure he mention’s this, whether he remember’s is another matter :slight_smile: He also needs to ask if he is actualy going to get his last Campath treatment, he was suposed to have it last year but his new neuro put it off till this year and then this has happend, I believe it’s no longer available. The relaps may have happend anyway I know but it makes you wonder.

Just feel no one is really helping him at the moment.

i’m fairly sure that you’ll be able to go in with him, just have a chat with him and ask him if he thinks its a good idea for you to go in with him.

thirst may be caused by some of his meds. i’m wearing kentera patches for my overactive bladder and if i still went to the pub, i’d be a drunk!!

i used to take my friend in with me because she was a lawyer and noted some points that i’d not been aware of.

good luck to you both

carole x

Yes it is a good idea - and you can make a list of things you want to ask them and write down the answers for reference.

My OH came in with me when l went back - yet again - to see the orthopaedic surgeon about my hip/knee. He asked lots of questions l would not have. And made sure the poor consultant realised how difficult life is for me with the constant pain - and falling over all the time.

Do let your son answer himself though first - just have your say when you feel he is not putting over the facts well enough.

F

Sorry - should not have presumed it is your friend. I’m sorry to hear it is your son, although I don’t think it has any bearing on the answer.

It’s entirely appropriate, for a patient who wants to, to be accompanied by their relative OR friend. But the key question will be: “Does he want to?” Your posts hint at some reluctance. If he’s adamant he doesn’t want to be accompanied, that’s his choice, and there won’t be anything you can do about it.

Not unless you managed to get power of attorney for his health and welfare, which would imply he was incapable of taking those decsions for himself. The threshold would be quite high, before someone would be deemed “incapable” of making such decisions. Occasional confusion, or difficulty expressing oneself, would not, by themselves, indicate someone was inacapable of taking responsibility for their health.

Tina

Hi Carole, thank you for your reply, he isn’t on any med’s, and that’s one of the problem’s I think. Like the patches for the over active bladder, I dont think he has even mentioned that to the doctor. (although this thirst doesnt help with that at the moment) A friend to go in would be good but they are few on the ground these day’s:(

Hi Campion, thanks for replying, that sounds like a plan I can put to him :slight_smile: his dad would be good at that. I don’t think he tells the doctor everything and I hate to say it but these day’s you need every symptom ‘officially’ listed don’t you.

Thanks again Tina, sorry I may have given the wrong impression, we definately take a back seat as far as his treatment is concerned, he is an adult, we just have to be there for him. We have followed his lead and tried not to make a big thing out of MS, no smothering aload :slight_smile: but, the way he is just now, it dominate’s all our lives. If he doesn’t want anyone with him of course we wouldn’t dream of pushing him. He is more than capable of making decisions, he just doesn’t talk about things very much so I have to pick my moments to ask about stuff :slight_smile: Just glad I can come on here and get some tips from people who know how it is for him. I am so grateful that you all have taken the trouble to reply.

Jash

Result! pays to prepare list. Looks like something nasty besides MS is going on, after a long consultation, a series of blood tests taken, new MRI ordered and another appointment made. ( still wouldn’t let me in with him though :))

Thanks again

Jash