just need people who understand

Everyday living
1

Well I went yesturday to my new neuro in london to get the results of my recent mri. Although 7 hrs in car round trip it was so worth it as I got everything explained fully to me which helps when considering treatments etc. So good and bad news. Good is that there is nothing new on my mri and np progression from 18 months ago, so either the copaxone helping or ive been in remission for that time. Although this is such good news I still feel down as I had it explained that as I was older when diagnosed (38) , I had motor issues ( arm didnt work) and the position of my moderate lesion load (know I have one in brain stem) I have a poorer prognosis…my local neuro said I was mild and borderline for dmds, which I insisted on. Glad I pushed and also glad I know acatually whats going on as hes said if I relapse or there are any changes on mri ( he will re mri in 10 months) I could go on a second line drug. I know im being well looked after and will get drugs I need but part of me is just sad about the whole issue of a poor prognosis, I know we dont know with ms and that things can change overnight but its hard to get non ms people to understand that although it was good news there is a reality that I will end up quite disabled… and thats not taking in the fact that even if I do well in the rrms stage if I go secondary progressive with the lesion load I have I will be in a right mess. He was surprised I had never felt off balance, dizzy etc which I presume comes from the brain stem lesion. Sorry for rambling just needed to get it off my chest with people that get the uncertainty . On a more positive note, thanks to tina for making me see sense on my last post. Hoilday booked anand off to turkey next week for hopefully a relaxing week.

Thanks zoe

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Hi Zoe Glad you found the appointment helpful. Can you explain what you mean by a poor prognosis because of a brainstem lesion? I have brainstem lesions and was told by my neuro that despite it being a lesion on an area that controls motor skills, if recovery is good between relapses that is the best indicator. I’m just a bit concerned now, especially as my recent MRI showed new lesions.

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I dont really understand myself, I just think that there are certain areas of lesions which indicate that you might not do so well. Saying that people can have loads of lesions and no disability or one and be badly affected. I dont think anyone really knows xx

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Also mine might be in a different area, its sounds like your neuro has explained your circumstances and mri well for u x

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HAVE a good time in Turkeys

Don’t get burned

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Hi Zoe.

I completely understand your concerns. I feel exactly the same. I have a heavy lesion loading on the right side of my brain and my brainstem is affected. All the reason why it was recommended that I opt for Campath straight away.

There is NO correlation between my current presentation and the dreadful state of my MRI scan at diagnosis (June 2013). The largest lesion looked like a newly formed continent! That was the bad news.

The good news is that I am now back to doing my sport, and actually, I look very normal. The problem is, currently, I don’t feel it. My fatigue levels are quite overwhelming at the moment - I am constantly fighting the overwhelming urge to curl up and sleep.

The concern with brainstem lesions is that that area of the brain controls several important functions of the body ie. breathing, blood pressure, heart rate,swallowing etc. But, I’m doing all these things rather well at the moment, so as you say, " No-one really knows".

Keep doing what you’re doing Zoe and enjoy your Summer vacation to Turkey

Tracyann x

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my brain stem has had lesions on it from the word go,22 years now since diagnosis,in fact when i read up about it, MS likes to attack the brainstem,and its quite a common thing to happen too,

i had a massive relapse in 2005,that affected my brainstem and then one in 2012 also.

J x

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Hi, I can`t understand it when neuros tell us what to expect from our future health situation.

Nobody…and I mean NOBODy can predict ie give a prognosis on how MS will go.

Your neuro has scared you silly by telling you, you have a poor prognosis.

I had the same experience and in later years, have come to think how wrong my first neuro was to say (his exact words back in 1998);

there is something very wrong with your left leg. There are signs of the same thing in the right leg. I dont know what it is, but I know it wont get better. When you think of your future, dont inlcude work in it.

His words left me reeling and here I am, so many years later and hearing te same sort of words from others.

BTW I was wrongly dx`d with PPMS for many years… a dx which has been changed a few times!

This is the same reason you feel upset. He has told you, you have a poorer prognosis.

Hes sewn a seed in your mind which has weighed heavily and you almost fee like gving up..............please try to put those words in a dark corner, far back in the back of your mind, as theyre nothing but harmful words.

As you say, you feel a kind of relief that your dx is set. But there are many, many people here, who will tell you that they are still on their feet, can hold a good conversaton with others, haven`t ended up in a wheelchair and have a decent lifestyle.

Of course there are sensible things you need to do, like make sure you pace yourself activity wise, eat well and take rest.

Lastly, life with MS isn`t the lie we planned. But it can still be and so very often is, a damn good life, with lots to look forward to…like that holiday next week. I am sure it will cheer you up. have a good time hun.

much luv Pollyxx

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Hi I’ve got a high lesion load and I’ve only had a definate diagnosis of RRMS since Nov 13. I have brain, neck and lower spine lesions. My MS neurologist said my MS was very active and I should go on DMT’s. I think Lemtrada would be best for me or BG12.

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Hi Zoe, I completely agree with Boudica (Poll) here. Statistically, some factors, such as older age at diagnosis for example, are associated with poorer prognosis. However, you are NOT a statistic! Statistics are good at predicting what will happen over masses of people, e.g: “80% will…” They are NOT good at predicting what will happen to one individual - i.e. whether they’ll be in the majority 80%, or in the 20. I read quite early on in my “journey” (don’t really like that word, but dunno what else to call it) that things didn’t look great for me, because I was diagnosed past 40, and DIDN’T have optic neuritis as a first symptom - which apparently is linked with better outcomes. However, despite all that, I was only borderline for DMDs - which I decided not to have (with neuro’s backing), and over 3.5 years later, I keep being told how fantastically well I’m doing. Now if I’d taken it to heart that things weren’t looking good because I’m over 40 etc, I might have had an unnecessarily pessimistic view of what the next few years would bring. A statistic is not the same as a personal prediction. You don’t know if you’ll follow the statistical pattern - neither do they! There’s no way of telling. You can be told what happens “on average”, but there may be no real person who IS average. For example, I don’t know the exact figure, but let’s say the “average” person has 1.99 legs. Why’s that? Because the vast majority have 2, but a small minority have one or none, because of accident or birth defect. So the average of everyone is less than 2. But nobody, in reality, has 1.99 legs! So the statistic that says average number of legs is 1.99 is completely misleading as a prediction of real people. T.

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Thank you everyone, its funny as when I said the above to my husband he said that it was a really positive appointment so its weird how we pick up different things and interpret them. I think the neuro in question is very focased on treating with higher strength drugs and hitting ms early before problems arise which is the reason I saw him so it is good that he is happy for me to stay as I am and that he will be prepared to monitor the situation which is something that works well for me and re evaluate if needed. It just hits me everytime I have an appointment and makes its all more real and I suppose you always hope that someone is going to say thats its a been a big mistake…I definetly respect his judgement but it would have been nice if he’d said it was mild ms (which my local neuro did) but if he had I probally wouldnt trust this as we all know that ms is very unpredictable and can change overnight anyway so we can only take what we are today. A lesson I need to learn as this is out of my control.

Thank you everyone, I was having a wobble and appreciate the support. Xx