Wendy

New diagnosis and before diagnosis
1

Hi in the process of being diagnosed with ms going by results of mri and lumbar puncture it’s leaning towards ms but my symptoms where improving but just had to take steroids for 5 days and some of my symptoms have returned has anybody else experienced this thanks

2

hi wendy

your best bet is to await the results or confirmation of them.

you’re still new to ms and all its delights!

i’m reluctant to say much because don’t want to instil fear but my original symptoms never went away.

after 10 years it’s like an irritating background thing.

i have times when the volume is lower and times when it’s banging loud.

you just learn how to adapt your day to suit.

what i think you need is to meet up with friends maybe for a coffee, or if you feel like a devil, a gin!!

diagnosis consumes your life so that it is all about illness and doctor’s appointments.

keep a fair amount for yourself.

i look at my diary and if the following week looks particularly dull or grim, i arrange an evening with people who make me laugh or get me drunk or both!

if it turns out to be ms, believe me - life goes on.

carole x

3

Hi Wendy

The steroids can take weeks or months to work. So you might have an immediate bit of symptom relief but then they just hang about. Eventually either your nerves will recover from the inflammatory attack with the help of the steroids, or you will slowly, slowly improve, or your system kind of compensates for the deficits. Or of course, like Carole, some symptoms never get better. I’ve not been able to feel my feet for 21 years. Not that I miss the feeling any more, I’ve forgotten what it felt like.

Of course, it’s not MS until the neurologist actually says the words. In any case, it could be a one off, what they call a ‘Clincally Isolated Syndrome’ (CIS) and you might get over it given some more time, never for it to be repeated.

But if it is MS, then you will hopefully be able to get some Disease Modifying Drugs (DMDs) which aim to reduce the number and severity of relapses. So again, given some time and some drugs, you could find that you don’t have a repeat of the symptoms that have got you here.

Meanwhile, feel free to post your worries, fears and questions on this site. We will try to help, if we can.

Sue

4

Thanks for your replies got appointment on Monday with ms team

5

Good luck. Let us know what happens.

Sue

6

Hi seen consultant yesterday and was diagnosed with ms so just don’t know what happens next to me

7

what should happen next is that you will be allocated an ms nurse and offered a choice of Disease Modifying Drugs (DMDs). i’m surprised this didn’t happen at your recent appointment. carole x

8

Hi

As Carole said, you should shortly be put in contact with an MS nurse. And believe me, a good one is worth his or her weight in chocolate.

Have a look at this: Newly diagnosed | MS Trust Hopefully it will have answers to some of your questions.

You could also start learning about disease modifying drugs (DMDs). Again as Carole said, you are likely to be soon given some options as to which one you’d prefer to be on. The aim of a DMD is not to ‘cure’ symptoms, or in fact to make you feel any better. Their aim is to reduce the number and severity of relapses. Each one has its average relapse reduction rate, but they do all tend to come with side effects. The idea is to balance out how active your MS is against the most effective drug offered to you together. But simultaneously you need to think about your lifestyle and what side effects you are prepared to risk. You could start by familiarising yourself with the different drugs. Have a look here: MS Decisions aid | MS Trust

You aren’t likely to be offered a complete free hand as to which drug you take. It depends on how active your MS is plus what prescribing centres have been set up in your local hospital, your neurologists preference plus your own view.

Any thoughts, worries or questions you have, feel free to come on here and ask for our thoughts.

Best of luck.

Sue

9

Just a quick note on my experience, so you have some kind of baseline. Finally diagnosed sept 17, saw ms nurse December 17. Only just now offered dmd. You are not automatically offered dmd, seems to depend on neuro and obviously your symptoms. It’s a lot to take in, but both the MS Society and MS Trust are good websites. There is also shift ms as well as this forum. I also bought Professor jelico book - overcoming ms, which I found informative. There are guidelines on prescribing dmd if you wish to look up. I’m someone who likes to look things up, but go at your own speed. I’ve just given some pointers for you. There are others on this forum who have been living with ms longer than I and so have more experience, but at least I can tell you about my fairly recent experience. I know it shouldn’t make a difference, but I think it also depends where you live. One last thing, which I only found out from someone I knew who had ms, the MS Society runs newly diagnosed days. I think these only run once a year in an area, but you can ask your ms nurse about them when you have contact. Best wishes.

10

Thanks everyone for your replies I have been referred to ms nurse but all new to me so a bit apprehensive and need to do some reading