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Crafty Cow

Curious rrms vs spms

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Crafty Cow

I am just a bit curious, so if I can pick your brains, so to speak.

 

I read all your posts, those of you who suffer from rrrms and those who have progressed, and I just had a question. For those who knowing had rrms and have since progressed, do you still have relapses like in rrms, or is it just a case of feeling ok one day and rubbish the next? I just wondered what the difference is for you.

 

Sorry for being nosey, but I just want to understand this more if possible.

 

Sam x

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Rama

Well I can only tell you how it is for me Sam. Others may have a different experience.

 

I actually didn't have much experience of RRMS. I was diagnosed in 2001 (surprisingly quickly when I hear of everyone's difficulties getting a dx) but for the first 9 years I had very,very mild symptoms. In fact the last three of these 9 years I had no symptoms at all. Then in 2010 I had a horrendous relapse. I was treated with steroids which helped me to recover to an extent. I stayed like this for about a year. Then very slowly over the past two years I have 'progressed'. There are days when I'm more tired but generally I feel the same day to day. It's just a very slow decline.

Two years ago I could walk almost 2 miles. Now I struggle to walk very short distances (less than 50 yards) and only with the help of a stick.

 

Hope this goes some way to answering your question.

 

Gill xx

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Nick

My own experience is not dissimilar. I was never formally diagnosed with RRMS but had the experience over at least the previous 10 years prior to a diagnoses of SPMS, of various relapses including Optic Neuritis, these were events that came and went (so to speak) Back in 2008 the rot set in with a much more constant form of the condition. When I say 'constant' that may be a slightly misleading description. My neurologist uses the phrase 'grumbling MS' which is a very good description of my own situation. There is no relapse as such, rather a much more continuous progression. The word 'progression' here is rather frightening but can be looked at in a positive light, Gill mentions 'slow decline' and for myself I like to think of it as an imaginary graph where my whole aim in life is to keep the line horizontal! This of course is not possible but I do feel that with very careful management there are many ways in which you can help to stop the line from going into a steep incline! Wishful thinking? I don't think so, there are lots of ways to look after yourself which all go towards helping your own MS situation. Since 2008 I have gone from an EDSS level of 4.5 to one of 6 so things have 'got worse' but when you learn a lot about your MS and you have learnt to accept it for what it is ( A lifelong condition) it is not nearly as bad as when you were first diagnosed. You know where you stand, so to speak, you also know when not to push things and also when to do things.

 

Any clearer now?

 

Nick


Just another Warrior...........

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Rama

A friend of a friend of mine has SPMS. Her MS 'progressed' for several years and then just levelled out. She hasn't had any progression for the last few years.

 

Just thought I'd add that wee snippet.

 

Gill xx

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Bigbird

My progression has been pretty much like Nicks. Its only looking back that I realise how much I've declined over the last five years. I started with RRMS 30 years ago but didn't really have many relapses. Then about 10 years ago I started declining gradually. It hasn't exactly galloped over the last five years but 5/6 years ago I was walking just wearing a leg splint now I use two crutches. Still it's taken 30 years to get here.

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Crafty Cow

Thanks all of you for your replies. It does seem a lot clearer now Thankyou.

 

I won't go into too much detail right now, but my worry right now is that I seem to have deteriorated so quickly since July, obviously this worries me. But since august I have to use a stick constantly, to walk, due to balance and right sided weakness. Unfortunately, tests are not backing me up, but tests for everything else has been exhaustive and nothing is showing. Only the neurological examinations are backing me up at present.

 

Obviously I don't want to appear a drama queen thinking the worst, and I know that with progressive ms, it shows itself on scans. But it is a worry all the same.

 

Thankyou again for your input!

 

Sam x

 


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lavender

Thanks all of you for your replies. It does seem a lot clearer now Thankyou.

 

I won't go into too much detail right now, but my worry right now is that I seem to have deteriorated so quickly since July, obviously this worries me. But since august I have to use a stick constantly, to walk, due to balance and right sided weakness. Unfortunately, tests are not backing me up, but tests for everything else has been exhaustive and nothing is showing. Only the neurological examinations are backing me up at present.

 

Obviously I don't want to appear a drama queen thinking the worst, and I know that with progressive ms, it shows itself on scans. But it is a worry all the same.

 

Thankyou again for your input!

 

Sam x

Please try not worry to much , i know thats easy for us to say , but the mind always jumps to worse , sure you will be fine , loads of support here !! i know i dip in and out , i am having abit of grief at moment , but as the buddha says ,( This too shall pass ,) try use that when you worry , take care sue xxx
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Nick

Sam,

 

This is the best place to discus your concerns, As Sue says you really should not worry to much. As has been said many times the precise nature of each persons MS will be different, also bear in mind that while we have been talking about 'gradual decline' this does not mean that sometimes we will be worse than at other times, for example this summer has been pretty kind to me so I have generally picked up a bit, looking back at last winter I was having a not so good time however. A lot of that aspect has to to with all those outside pressures and the way it effects you, also I find that other problems always have a knock on effect with the MS. This all comes back down to the businesses of life balance, In your situation I do appreciate that you are in a tricky position, and I feel that getting the answers is so much more than gaining a technical understanding of conditions like MS. One thing that makes the forum so useful!

 

Best from

 

Nick


Just another Warrior...........

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Crafty Cow

It really is the best place. With all respect to neurologists, and any other doctors for that matter, they don't always look at the whole picture. That is the problem I have with the one at present, but my original one was fantastic. Listened to everything and not just concentrating on test results.

I felt great this morning when I got up, did the school run and then a quick tesco shop, child free, but as soon as I had done tesco and on my way back to the car, it hit me. Walking went completely to pot, shaky and dizzy. Like you say it's a question of prioritising jobs to be done, and no longer am I the person that could do what I did. Thankfully I have finally realized that, but now I need to know the answers as to why this is the case....but that could be an answer that doesn't come for a few years yet I guess.

 

Thanks for all your input, it means a lot and especially knowing that at least some one knows what it feels like to go to do a few small jobs and then lose the ability to do the simplest of tasks.

 

Sincere thanks.

 

Sam x


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