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Communicating with the experts

I probably won’t make a lot of sense. I know my way of putting things, with the medical professionals don’t seem to work very well, so I thought I would ask for advice !

Ok, so what’s my issue.

Since my diagnoses nearly a year ago I belive I have had two (minor) relapses. Both these occasions I mentioned it to my ms nurse, but as I really really disliked the affect steroids had on me the first time I saw no point in having much discussion around it.

When I was diagnosed I sort of excepted I would have relapses and excepted that this was a new normal part of my life, just hoping that nothing would happen that meant I was unable to work. (I enjoy it). My ‘event’ that lead to diagnoses I could probably have worked through if it hadn’t been for the after affect of the steroids. (I found the 5 weeks at home really hard to deal with).

The problem I now have is after my last appointment with the neorologist, and communication with my ms nurse they don’t seem to recognise that I have had two relapses. During the appointment he talked of an mri before I saw him next, his letter, two months later seemed to suggest I had not had any relapses. When I contacted my ms nurse and asked when I would get an appointment through for a mri she said that he would deside at my next appointment if I needed one !

when I first saw the neorologist I was having a relaps. My symptoms have not been documented outside of relaps so I truly don’t understand how they can really know what is what. I mistakenly believed they would just ‘believe me’.

it feels like because I am managing to work full time I’m ok. They seem to miss that a lot is down to my level of drive to be at work. I did point out to ms nurse that I only had 3 days off when I fractured my ribs. (X ray didn’t show, so I thought just bruised, gp identified they were fractured).

i really don’t get it, I am confused and don’t know what to do.

Hi Sarah

Can you put dates, symptoms, duration on the relapses that you’ve had? If you can, then they really ought to take your word for it. If you can’t, they I can see that they might have trouble.

Some people recommend that every time you have new symptoms or a recurrence of old symptoms you should make someone aware, either MS nurse or GP. I don’t agree, if you don’t want anyone to do anything (ie steroids), then what’s the point?

If you note that a relapse is new symptoms or a repeat of old symptoms that lasts longer than 24 hours and happens at least one month after the last time you had those symptoms: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse then they should take your word for it.

I can’t remember, are you on a DMD? If you are and you’ve had two relapses in a year, then you have to ask whether it’s working well for you. If you’re not, then maybe you should be?

To me, it sounds likely that I would be believed because I know the right words to use and you wouldn’t because you don’t express yourself as well as me! Does this sound like what you’re saying?

Sue

And by the way, during the five years between my first MS attack and tests, and my actual diagnosis, I had lots of relapses. I wouldn’t have known they were relapses because I didn’t know anything about MS, or that I had it, but optic neuritis twice, legs going numb, falling over, dropping things, were all symptoms of relapses that I’d not have been able to explain because I had no idea of the right words to use!!

Today, I’m 21 years down the line and have learned the right ways to put things and can explain MS relapses well. Eve though I don’t have them any more!

Sue

Thank you so much sue, your really helping me to remember/ get to what the problem is.

What is frustrating is that with both I stated I had two relapses, the conversation moved on to other ‘stuff’ (work hours issues). Neither challenged my belief. So I didn’t realise they were coming to their own conclusions. Ie. Not relapses. I didn’t fully explain everything that had had lead to my conclusion as I felt ‘believed’. I don’t want to be rude to them, but ‘warm friendly chat’. Leads me to give the sort of answers I would give a consurned relative. I need direct questions, to be argued with to access why I think what I think. I value them both, I realise the issue is my ability to communicate, I’m really not sure how to help them understand that they need to be direct, not chat and interpret. I started to type a full description of the times I believed relapses. Then remembered my real reason for posting was not reassurance that I was right, but how to ensure I get heard next time I see them. When I first saw neorologist I took a daily summery of symptoms. He was not interested, but I left it with him. I don’t know how to explain that although I am a fully functional working adult, I can’t give instant, accurate, honest answers about me.

I really don’t think you are alone in this. Most of us (me included) can have trouble explaining what is wrong with ourselves. It’s easy to talk about someone / something else. But when it comes to us, it’s a lot harder to come to the point. As well, when you’re meeting neurologists you end up having more of a general chat. And because they are highly educated in their field, you feel as though your arguments aren’t as valuable as theirs. Plus, when you’re talking, you think they’re getting what you’re saying, it’s only at the end of the conversation that you realise they’ve not ‘got’ what you’re saying at all. I don’t think it’s a case of not being believed, it’s just that you think they understand what you’re saying and accept it. And they don’t. Basically it’s a fault with them, not with you.

Do you need them to understand about the two relapses this past year, or are you more concerned about next time you see them?

If you need them to fully understand the last relapses, then it is a case of writing to them (PM me if you need help - I know it’s something you can do, but to make sure they get what you’re saying, it might be helpful). If it’s more a case of how to make them understand you next time, it’ll be a case not so much of a day to day thing, but really clear notes of what has happened to you and when. So start a diary and then you’ll be able to list anything that’s happened, dates when symptoms began, exactly what the symptoms were, how long they last, etc. And don’t let them bog you down with work issues. Sometimes you push yourself to work when you could actually do with time off. Work has nothing to do with MS symptoms, and they need to understand this.

Sue

Thankyou sue. Hopefully it will all work out. Ms nurse is going to talk to neorologist next week, depending on the out come I may or may not need to do more.

Neorologist talked of doing an mri before my next appointment in case I was having ‘silent’ relapses. I stated that I had had two relapses, he didn’t really acknowledge that.

Then the letter ‘6 weeks later’ , was some what different than the conversation.

But where was he coming from on the 'silent relaps ’ ?

Silent relapse is the formation of new MS lesions that have no presenting symptoms.

Thanks, this ms stuff is so confusing, I start to think I understand it and something new comes up. I am also struggling with the fact that I had ‘noticeable relapses’ that he was not hearing. Great that he wanted to check if I had had ‘silent’ ones. But it’s cool, next time something happens I will be jumping up and down & wasting nhs time to ensure I am heard. Live and learn !