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Help needed in Limboland

As you can tell from the title I am currently in limbo and need a little help. I was diagnosed with CIS about 6 weeks ago. My neurologist said it is more likely than not it is MS, as it is very likely that I have had a previously undiagnosed less seveare event about 1 year ago.

During this event I had symptoms for about 3 months of mostly numbness, stiffness, pins and needles, and fatigue. Then for the past two weeks my syptoms started to improve, until I only noticed numbness in my feet. The fatigue is always present. Now my symptoms appear to be worsening again, with the numbness increasing and stiffness returning.

If anyone can help me with any of my questions below that would be great, I know some questions probably no one can answer, but advise would also be good, if anyone has any.

Is this a relapse, a continuation of demyelination from the CIS, or is it just that I may not have improved fully yet?

Will these symptoms ever fully go away, or is it normal if they come and go or quite a while.

Is there any help I can get in the mean time?

When will I know if I am having a relapse if my symptoms keep coming and going from the first event had?

Thanks in advance to anyone that replies.

Hi Justme x

I'm not diagnosed with anything yet - but from reading on this site one thing I do know is everyone is different - and it seems pretty common for the symptoms to come & go with different intensities xxjenxxxx 

Hello, and welcome happy2

 

I'll try and answer, but I'm afraid it may not be a lot of help!

 

After an attack/relapse, symptoms may seem to get a lot better and even go away completely, but very often they are easily exacerbated, for example because of a virus or infection, or simply because we get too hot or tired. The other thing is that recovery from relapses is not always in a straight line - we can go up and down for a while before things level off. To add to the confusion, a relapse is basically neurological symptom/s in the absence of virus/infection that last at least 24 hours and that start at least 30 days after the start of the last relapse: they don't have to be new symptoms so it can get really confusing to try and decide what's a relapse and what's an exacerbation or even just symptoms that have a tendency to come and go a bit on the way to remission.

 

If I were you, I would work on the assumption that it's not a relapse unless things are definitely getting worse (back towards previous levels) and/or you get a new symptom. This might be a blip or it could be that you're coming down with a cold or you've got a UTI or something so hopefully your recovery will get back on track soon.

 

I think there's a very rough rule of thumb that what's left after a year is probably what's going to be left forever. However, as with all things MS, it varies, e.g. I know people who continue to improve in the second year. So 3 months is early days yet - stay hopeful!

 

If you haven't been given an MS nurse, then your best port of call for help is probably your GP who might be able to prescribe meds and can refer you to things like neurophysio and OT if you need them.

 

As far as knowing if you are having a relapse, hmm, I'm not too sure! It's sort of something you learn with experience. I guess I would say if it's something new (and is definitely neurological) and it lasts at least a day then it's a relapse. If it's an old symptom, but you haven't had it in a while, then it probably is. If it's an old symptom that comes and goes pretty regularly, then it might be, but the neuro probably wouldn't be very interested.

 

Sorry there aren't any definite answers but I hth!

Karen x

Hi ya & welcome to the site happy2

MS is different for everyone and on top of that it can also vary for us as individuals to. Plus it's not by any means an exact science which makes it so much harder to understand.

It's very difficult, but over time you'll discover what (if any) ongoing symptoms you may have on a day to day basis -symptoms that may always be there to some degree. If these symptoms are particularly bothersome then speak to your nurse, GP or neuro and ask about medications - there are lots available.

A relapse is when new symptoms and/or old symptoms appear and /or worsen for longer than 24 hours (but start at least 30 days after the last relapse).

Bugs, infections, illness and even things like the temperature can exacerbate symptoms too. For example, some people find that if it's hot or cold then their fatigue is particularly bad which can then affect other symptoms too. So sometimes it's very difficult to fathom exactly what's going on!

A relapse can last days weeks or even months. It's very much an individual thing.

As Karen said, how you're feeling at the moment could be a 'blip' - it does happen. Obviously if your symptoms get a lot worse and they don't appear to improve at all then contact your GP/nurse.

In the meantime listen to your body & rest up as much as you can - look after you. Try not to stress out too much either cos this can exacerbate symptoms too scared2

I hope you start to feel better soon

Debbie xx

  

Thanks everyone,

All your answers helped, it also helps just to be in touch with people about what is going as, especially since MS is not straight forward.

I guess it is just a case of figuring out my body and how it is reacts. Which if it is MS from what everyone is saying this may take a while and even then may still be a bit of a grey area.

Feeling a bit worse today actually, my legs are starting to stiffen up and are feeling a bit weak, but I did have a bad nights sleep. I will try to rest up a bit, and see how I am in a few days. A visit to the GP can never harm if I am worried.

Cheers, Soph. Xx

Hi Soph,

Making small adjustments can help too. For example when I'm at home I'll do a couple of chores then rest and so on. I don't do them all in one hit either - I spread the jobs out over time - days if possible. If I'm feeling particularly bad then....well...things like the housework just have to wait quite frankly!

Work is a different matter cos obviously I can't just drop everything whenever I feel like it. But I have made lots of changes and adjustments there too which do help and thankfully my colleagues & bosses are very supportive too and know when I'm feeling grim.

I've learnt to ask for a bit of help now if I need it - which being the stubborn and extremely independant twit that I am...lol....I've never been able to do in the past! 

Look after you

Debbie xx