A few weeks ago I went to the hospital because I thought I was having a relapse, they confirmed it and gave me 5 days of steroid tablets.
Yesterday I had my annual check up with my neuro (a new one as my old one left). As it was the first time I’d met him, he went though my full history, right up to this latest relapse. Cutting a long story short…he told me that the last 7 relapses I’ve had, haven’t been relapses at all and there is no point in giving me steroids at these times! He said that they are flare ups from previous damage done and it could be triggered by heat, infection, depression, stress and something else I can’t remember. After some more discussion he decided that I was depressed, I said I wasn’t, he said ‘I’ll leave that one with you but write to your GP so you can discuss it with him if you think you need to’. He also said that the wobbles I’m having at the moment are a habbit and nothing to do with MS, because I wobbled when I stood up or changed direction and when I was standing and closed my eyes but when he distracted me with other tasks (touch you nose, touch my finger sort of stuff) I didn’t wobble. So when I’m thinking of something else it doesn’t happen, therefore it can’t be MS causing it, even though I said I wobble if I’m picking the kettle up, or slicing veg etc (so doing something else). He also thinks it’s a confidence issue, which could also be linked to depression!
I can sort of understand where he’s coming from with some of the things he said but I don’t understand how other doctors have been treating me with steroids for relapses, if they aren’t relapses. How can he decide that I’m depressed or stressed when I and the people close to me don’t think I am (I don’t tend to get stressed about anything and have a pretty possitive outlook on life).
Each neuro has a different interpretation of a relapse. Im similar to you, know in fact Im not right, have wobbled a lot in the past and was told it was the heat making me feel weak. Then when I received my notes it says: ‘patient may have small lesiion on spine’! So one thing is said and another noted. Strange very strange however if you know yourself that the wobble your experiencing is new, then surely its either an advancement of an old lesion - meaning it may be again active, or its a new part of your nervous system playing up. Im not medical but do know when something strange happens it cannot always be explained away by depression. Depression does play a large part of our illness in that we never know from one minute of the day when symptoms may arise.
Try speaking with your gp and go onto depression meds to see if your symptoms change. If they dont (they have the effect of calming down the nervous system) then something else is going on.
Steroids should never be widely given because they can thin the bones - I know I now suffer osteoporosis. However, some neuros like giving them out like sweets whereas others like to see the progress of a relapse before admission to hospital for a dose - usually in severe relapse states.
Go with it, see what happens, then if no difference then ring ms nurse and insist its a definite change one for which depression meds is not making any difference.
Did the steroids help when you have had a relapse?? probably I suspect. My relapses happen if my hormones go up and down and if I am too stressed. I think everyone suffers differently. And yes I have suffered with depression and it has made things worse . If the steroids work then keep on with them. I also get a bit shaky when I cut the veg I feel its because its quite tough on the old muscles. I am sure he was just trying to be helpfull but you can’t put all ms symptoms down to depression ha ha
Thanks for your comments I can understand about the old damage playing up, I think that’s good news as it means that the Mitoxantrone did the trick and stopped new relapses (I’m still on Copaxone). The steroids do seem to have helped but the neuro said you always feel good with steroids, but they don’t work when it’s not a relapse and this isn’t a relapse!!! I’ve not had steroids for over a year and really don’t like them. I tend to get all the bad side effects and none of the good ones (loads of energy etc).
As you say I know myself and how I feel and what’s old and new, just seems that maybe these wobbles aren’t really different when it comes down to the nerve damage etc. I do think it’s wrong that he’s pretty much insisting that I must be depressed when I know I’m not (I have been treated for it in the past, due to MS).
I’d sugesst you change your neurologist quicckly as he obviously isn’t listening to what you are saying and is disbelieving the evidence in front of him.
Don’t waste your time on him and have a word with your GP about how you were treated and about his suggestion of depression rather than dealing with the issues - he’s sounds like a cop out merchant.
Don’t waste another moment on him - he’s a useless lump of …
Morning, sorry to hear you’re having problems with new neuro, I myself was in the same boat, I’d seen the same one since I was DX, then had to move to a new one, like you went through all my history, then said, “well there doesn’t seem to be a difinate DX given”, so therefore I’ll call for a new MRI, plus blood tests, well when I came out I was fuming, told my hubby later, well he couldn’t believe it, went to my GP same reaction, she even printed off all the letters sent to her saying patient has MS, so six months later went back, and boy this time was I ready, new lesions on MRI, bloods ok, when I confronted him he backed down saying, " I would never say you didn’t have MS ", I’m proud to say his feet didn’t touch the ground, and I did that for me, but also reading some of the postings on here like yours, find a new one, thats my advice, sorry to go on, take care, and have a good day, Jean
My own view is that you have to trust your Neuro - or find another. Simple as that.
So lets look at the other things:
Heat can make MS worse. No argument. How much worse varies - we really are all different.
Relapses. The usual rule is that a relapse must last longer than 24 hours. Some Neuros would say a lot longer. My first one said “If it lasts more than 24 hours, make a note of it; if it lasts more than 7 days - get on the phone”. My second one (first one left) suggested that relapses are usually more than 48 hours, often more than a week, and anything less than 24 hours did not count. And now he has moved on!!
Steroids. Rule of thumb - as per the BNF - is that you should never have steroids more often than 180 day intervals, and you need to be tested for any UTIs first. I do know one person who has an agreement with her GP that she can have a five-day course of tablets to take on holiday with her. She has never abused this, but the potential for abuse is obvious. I do think that an MS speciallist should be involved in the prescription process, though.
Depression. Well, that is a tricky one. There is a bit of a rather big difference between feeling a bit down, and being clinically depressed. I would not exactly trust either a GP, or a Neuro, to diagnose depression - not without knowing their experience. OK, so I can pick my Abnormal Psychology textbook of the shelf (I would have to turn round to reach it) and it would tell me the symptoms - but I do not have the experience to apply them to anyone other than myself. I do know that successive governments (which means the same civil servants) do “worry” about depression - and get GPs and Nurses to ask about it.
The wobbles. There are a lot of factors that can lead to instability. Loss of fine motor control is one of them, Another is a basic weakness in one’s leg muscles. The onset of the condition of “Dropped Foot” is a third - long before the condition becomes obvious. Fourth is the thing that Sue’s Neuro was obviously thinking of -“I know I’m going to wobble”, and surprise, surprise, you do wobble; take your mind off wobbling - and you don’t. To go from there to depression does seem to me to be a big step for anyone but a proper Clinical Psychologist, oe a Psychiatrist. If, and I do mean if, it really is in your head, then there are several psychological techniques to sort the problem out - some of them you can use on yourself, even.
So, Sue, it all comes back to one question: Do you trust your Neuro? And, from that, are you in a position to find another? Is there another hospital within easy reach? Will your GP refer you to another Neuro? Only you can answer all these questions.
Thankns everyone for your views and advice. I think I’ll take a trip to my GP, once the neuro’s letter gets to him. He’s really good and will hopefully be able to give me some advice.