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Stroke or MS?

Don’t tell me, no clues, I’ll get it in a minute, the name’s on the tip of my tongue. I think it starts with a T, or is it an R, maybe it’s an S, hang on I’ve got it, no I haven’t. That feeling when you can’t quite bring a name to your conscious mind, is very surreal when the name in question is your own!

That’s what happened to me when, the experts believe, was a stroke, not being able to say or write the simplest of words like, yes, no, thank you, was extremely frustrating and disturbing.

Frustrating, because it wasn’t that I had completely forgotten them, just that I was unable to bring them to my conscious mind, To explain exactly what that was like is impossible, but I have considered how I could give others an indication of how it felt. The first analogy l came up with, was a box of words, but on further reflection a better example is a library.

If you imagine that each word in your vocabulary is a book, to find a particular book you use the catalogue which tells you where to find it, but if there were no catalogue, finding that book becomes very difficult. Following my stroke it was as if my "catalogue"was missing, I knew what book (word) I wanted to select, but had no way of finding it, other than to search the whole library. With each book I eventually found I could start the process of rewriting my catalogue.

I spent most of my first night in hospital trying to find and memorise a few simply words. I did this by firstly trying to say my name in my mind, after a considerable amount of effort and concentration I finally could, and then repeating it until I could say it without much effort. I did the same with three or four more words, before going back to my name, and starting the process all over again.

Fortunately for me,using a similar process, each day since, there’s been small but significant cumulative improvements in my speech and writing. I’m not back to where I was before the stroke, but I’m definitely getting there.

I’m really pleased with my progress, especially because when I had the stroke, I had no idea how temporary or permanent the effects might turn out to be. The thought of not being able to express my thoughts, emotions, and opinions was not only extremely concerning, it actually horrified me, and so I made a conscious decision to fight as hard as I could, to regain these two vital means of communication.

My speech is now greatly improved, though I still sometimes stutter, and have difficulty finding some words and phrases, and it can take me some time when writing pieces like this one, and I continue to work hard in order to make further improvements.

This happened on Christmas Eve 2015, and since then, no one can give me a definitive answer whether a stroke or my MS was the cause. The neurologist, the stroke nurse and my MS nurse, have only told me that it was probably a stroke.

I would be very interested in whether anyone else here has ever had a similar experience.

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my first ever big relapse that led to my diagnosis in 1992 was like this.

I was completely numb down my left side and my speech and swallowing were affected.All that came out of my mouth were jumbled up words that no one could understand at all. I had to communicate by writing down what i wanted to say for a while and when i could speak i was slurring badly.I was taken into hospital for tests and they said either a stroke or brain tumour.

I had an MRI and was diagnosed as having MS.Even though my speech came back i found i still could not talk for long,for example i couldn’t be on the phone for too long,if i am i start to slur my words. Also my swallowing isn’t the same I have to really concentrate on eating too i can’t talk and eat at the same time,and i have to eat in peace and quiet too.

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steve

july 2012 it was 3 days before i was going to crete with my 2 youngest kids. something was far wrong but i was determined to get to mums house. i contacted airport etc and got help throughout the journey.when i landed i couldnt speak or walk. i spent the next 10 days sleeping for 21hrs daily and mum attending to my every need, which included diy physio and speech therapy!

i was still too poorly to travel back on my own with the kids after nearly a month there so mum flew back with us. during the hol there was regular contact with my gp who set up emergency care for on my return. i have never been in hosp due to ms!

fast forward 5 yrs-i have regular carers, speech i can communicate but its hit and miss which words come out, right side very weak-use a powerchair, doubly incontinent but my youngest 2 are still at home with me and i am gran to 3 grand daughters. life is not as hoped but i am here-some of my friends arent.

my life changed dramatically within hours-you have to play the hand you are dealt, if its a rubbish one then cheat!

nearly time for my nephew to arrive-have cancelled my carer and we are spending the day together-yippee!

ellie

ps i did contact the stroke nurse for info only because no-one would believe that ms could have such a huge impact so dramatically and quickly-erm, yes it can and did! i was lucky that at the time i had a fab gp since retired but new one is of similar nature-phew.

I was diagnosed with PPMS 3 & 1/2 years ago after multiple MRI’s & tests.

The constant slurring & dragging my limbs around has been a pain for years.

The local GP said I had a head ache, before he retired. Fat lot of use he was.

I often compare PPMS to being similar to a stroke. The problem is, it never knows which side to pick.

Unlike the local pick pockets, who know exactly what side to snatch. Even they confuse me these days. You don’t expect a low life to get out of an Audi & pretend to be a helper of sorts. The taxi drivers will give you your wallet back, with all your cash. You’ll wonder where your credit card is, the week after. When you’ve been robbed blind.

MS is awesome!

Hi Steve,

Good to hear from you again. I haven’t had a similar experience but I wanted to say what skill and determination you showed in how you tackled the problem.

Regardless of whether it was a stroke or MS, the fact remained that part of your brain wasn’t available. I suspect that by your dogged determination to regain access to that part of your brain you retrained or ‘rewired’ yourself to open up the pathways to your “library catalogue”. It’s what all learning is. You may have done the mental equivalent of getting a degree.

At the moment I am only bothered by physical disability and, as others do, use repetitive exercise to try and keep my muscles from turning into lead.

Your example, so very eloquently written, is a brilliant lesson to anyone who wants to fight back against disability; whatever the cause. Thank you.

Best wishes,

Anthony

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There was an article in the Guardian yesterday (Silent Treatment by Helen Harris) about losing the power of speech temporarily after a brain tumour operation. She says it is “most often caused by a stroke, but can be caused by … multiple sclerosis or other neurological conditions.” I have a friend with MS who has lost the power of speech, I think twice. Do you know why your neurologist thinks it was the stroke that did it?

hiya again

how did they treat u without knowing for sure the cause?

are there specific ‘stroke’ drugs? i guess asprin but dont know enough to guess others!

were you ok taking them even tho it might have not been a stroke?

lots of questions! u just got me thinking-thats all!

ellie

Hi Anthony,

Yes you are absolutely right, it least for me training my mind, was as difficult as any physical regime, but what I’ve gained in terms of mental and emotional strength is beyond measure.

When this stroke, or whatever it was, happened, I was not handling my MS very well, I’ve never been good at handling my emotions, either ignoring them, or overreacting to them, in complete contrast to the stubbornness I show to more intellectual pursuits. Facts and figures, I’m able to absorb, eventually, but the death of my mother, for instance, nearly completely destroyed me.

As the severity of my MS symptoms grew so did my worry, fear and anger, reaching a peak, just before this particular “incident”, when I feared and was angry at everything, not just about my MS. Below are a few incoherent thoughts I wrote at the time which may give you an indication of how I was feeling.

"Everything’s wrong, back to front, inside out and upside down.

Waves of countless tangled thoughts and emotions rushing, tumbling and swirling saturate my mind, like debris in a flooded river crashing over a waterfall, and unable to swim, I’m drowning in the torrent.

Life seems cracked and fractured, like a cubist painting, or the pieces of a broken mirror reflecting only partial images of myself.

The surety of rationality is fogbound in the uncertainty of so many questions that have no answers.

Fond memories have become deep open wounds, seeping out an endless puss of venomous anger and regret.

Any dreams and hope I had in the future, are phantoms, floating and fading ever further away from me.

Moments of clarity are an illusion, created by the ghost of my former self, giving the false impression that merely trying to go through the motions of everyday life is normality.

I looked inward for comfort, only to find an unrecognisable cold hearted stranger, bleeding with angry bitterness for the world. Washing away my ability to empathize with what I perceive to be the pathetic petty problems of others, and that in some way they are mocking me, with the ordinariness of their lives."

Looking back, losing those most important forms of communication could be seen as a metaphor for the fact that I think, no one really hears the screams of those battling chronic illness, but foremost in my mind was how I was personally affected.

I wanted to take back control of whatever life was still left to be lived, but every time I tried, it was like caching treacle, every time I thought I had hold of it, it flowed through my fingers into a sticky mess on the kitchen table. What I needed was a jar, this was to come in the unexpected form of a stroke!

I could have seen this as yet another way in which fate was determined to f*** up my life, but to my surprise I found myself revitalised, I felt that I had something I could fight, and more importantly, win! Something I had not felt for a very long time. With this new found determination, I began to re-evaluate my life, and how I had reacted to my MS.

Since then, I see myself in a very different light. This of cause could be completely wrong, and change again with time, but for now I’m content with facing each day as it comes with as much fortitude as I can muster, and learn to accept what I can cannot change, and to do my very best not to let my emotions dictate my thought processes.

The MRI and CAT scans were inconclusive, and so the diagnosis of a stroke was made mainly by my symptoms, the fact that I couldn’t even say my name, and the fact that they come on so quickly, with no prior warning.

Hi Ellie,

I was already taking Aspirin after a heart attack I had in 2000, so it was recommended that I change to a an antiplatelet drug, called Clopidogrel.

My main focus was on trying to get my speech back, and hoping to be discharged before the New Year, and was quite happy to go along with their recommendations.

steve

your post #6 was so poetic.

sad but poetry all the same.

glad that you are no longer so sad.

keep on writing your thoughts because you have a skill with words.

carole x

Hi Steve,

I was struck by your phrase “… what I’ve gained in terms of mental and emotional strength.”

It hadn’t occurred to me that a rigorous mental discipline could have benefits on mental health. I’m not separating mental health from emotional well being.

Is it that every time you win one little battle, in a war, that one’s self esteem goes up a notch?

This process is slow and often imperceptible, so that we may not even notice how much ground has been fought over and won back.

Regards,

Anthony

I’m not a doctor but the things you mention are often the case with aphasia (speech loss) caused by MS. Maybe you had other symptoms which were more indicative of a stroke. The only reason it might matter is because it might make you eligible for the strongest MS drugs. If you’re interested in going down that route, you might get a second opinion on the whole thing from a really good MS neurologist.

I feel I must say (although I’m so sorry to say it) MS attacks often cause symptoms you’ve had in the past to come back. That’s why I’d think of drugs, if I was you.

Thank you for your eloquent and inspirational thread.

I was told by the neurologist, that one of the reasons he thought that I had suffered a stroke, was that I had previously been diagnosed as having SPMS, and do not have relapses.

I know that some people with SPMS, experience relapses, but I never have, ever since I was first diagnosed, 15 years ago, and I have questioned whether I may actually have PPMS.

For that reason I suspect myself that I did in fact have a stroke. I hoped that the MRI would give me an answer, but it didn’t, leaving me with the possibility that it could have been my MS.

That’s why I started this thread, and am very grateful for everyone’s comments. I think I will never really know, another uncertainty for me to live with.

Hi Carole

​Tha k you so much, and I’m so pleased that you consider my words as poetry.

Ive been trying, and failing to express my thoughts in the symbols that we call words, for some time. I sometimes get close to saying what I intended, but the nature of emotions, make it impossible to get to the core of what I’m actually feeling.

This is not helped by the fact that I’m not very good’. I’m fully aware that my punctuation and grammar is not the best, I failed to learn the rules at school. This, I put down to the idiots who, when masqueraded as teachers, did their utmost to blame me for their own inadequacies.

What’s more troubling though, is they may have had a point. When to use a coma, semi colon; or colon: should it be that or which, who or whom? This still boggles the hell out of me, and this failing has worsened following my stroke, however I believe that the fear of getting something wrong, should never be used as an excuse not to try getting it right.

In the end, it doesn’t matter, I write for.myxelf, as a way of rembering how I felt, and a way of sorting and clarifying, what are often confusing and sometimes conflicting thoughts and emotions. If others can also get something from it all the better.

hiya

thanks for your reply.

mine happened within hours too. my voice, speed, rhythm tone etc is all different

i agree with others-your writing/descriptions are brill, thanks again!

ellie

Your neurologist is not with the consensus of MS experts on this. Here’s a quote from the MS Blogspot - you can read it at Multiple Sclerosis Research: #NeuroSpeak: reclaiming MS as one disease.

"Redefining what is a relapse and making MS one disease? #1-disease-not-2-or-3-diseases #NeuroSpeak

I was reminded at a meeting last night why it is important to publish consensus statements. Barts-MS hosted a UK NEDA [No Evident Disease Activity] meeting in 2014. As a group of UK MSologists we reached a consensus that we would stop referring to new MRI activity as ‘MRI activity’ and start to refer to it as a ‘subclinical relapse’. In other words we all agreed to change our working definition of a what constitutes a relapse…

Changing the definition of what constitutes a relapse has implications for how we use DMTs in clinical practice and challenges the older NICE guidance on not being able to escalate DMTs on MRI criteria alone. To escalate from a platform, or a 1st-line, DMT you need to have clinical attacks. However, the newer NICE guidance allows alemtuzumab to be prescribed to pwMS with active MS defined either clinically or on MRI and to retreat on MRI activity . The latest guidelines therefore recognise that clinical attacks and MRI activity mean the same thing biologically; i.e. that MS is active."

The doctor who wrote this probably knows as much or more about MS than anyone else in the world. He is militant about the idea that RRMS and SPMS and PPMS are all really just MS. He and many other MS specialist neurologists believe that if you have clinical relapses (eg aphasia) or subclinical relapses (where you can see inflammatory activity on an MRI but don’t have symptoms) then you should be offered disease modifying treatment, because this will reduce the damage your MS does to you.

Suggesting that MS is one disease is always controversial on this forum. I apologise in advance to anyone I’ve offended by posting this.

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Hi Steve

I echo what everyone else has said, you’ve managed to convey your experience in a way that speaks to us. You say that your written English isn’t good enough. Ultimately, I’m of the view that if what you write is readable, then to hell with putting apostrophes, commas, fullstops and colons in their ‘correct’ places.

The most important thing when writing on here is not the quality of your writing or the grammar used, it’s simply to space it out.

And that, you have done. So keep writing, your experience, whether caused by MS or stroke has been awe inspiring.

Sue

Hi Sue,

Thank you and I completely agree with you.

I once visited an internet site, specifically designed for armature poets to submit new poems to be considered for publication. They said poems could be submitted in any style or topic including freeform, but, and I quote, “they must conform to the accepted norms of poetry writing”. What that’s supposed to mean I have no idea, and quite frankly don’t care.

No one should ever discourage or criticise anyone’s writing because it doesn’t conform to some arbitrary “norm”, even the best authors use Proof Readers to correct their mistakes. There are some within literary circles, an elitist clique, who believe that only “proper” literature has any value. I say, that anything that imparts something completely new to me, is of the highest value.

Writing in all it’s forms, is merely a way to communicate information, ideas, and emotions by the use of symbols, words, or both. What’s important ,is that the meaning of what we wish to convey is received by the reader, not how it’s done.

Everyone has a story, and those who wish to share it will always have my gratitude and respect. Not only do we learn through the experiences of others, we also gain a greater understanding of one another, something which can only be a good thing.