Hi has anyone else got “mild Ms” and if so what are your general symptoms?
Thanks
lisa x
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Hi Lisa,
Sorry, but there’s no such diagnosis as “mild MS” - that would be comparable to being “a little bit pregnant”.
MS is sometimes retrospectively judged to be “benign” after ten years or more with minimal difficulties, but nobody (doctor or patient) knows at the outset whether someone’s disease wil be “benign” or not.
So unless you’ve already passed the ten year mark, I do not think it appropriate for anyone to tell you your MS is “mild”. You just either have it or you don’t. Beyond that, there is a huge spectrum, and you may be lucky or unlucky (or middling), but as it doesn’t come with a free crystal ball, the judgement of that can only be made with hindsight.
Because “mild MS” is not really a clinically different animal, there is not one defining set of symptoms. The symptoms of all types of MS are largely dependent on where the lesions form (even “mild” MS would have some, as without lesions, you wouldn’t have MS at all).
Inflammation of the optic nerve, for example, causes completely different symptoms to inflammation of the spinal cord, but as both are part of the central nervous system, you could have neither, one, or both. For the unlucky, a single lesion in a critical place can be more disabling than multiple lesions in different places, so although number of lesions is often used as a measure of disease activity, it doesn’t always correlate well with how somebody is practically affected, as some lesions have few symptoms, or even none (brain just reroutes the traffic to avoid the damaged bit).
I was diagnosed over four years ago, and feel I have been relatively lucky so far - especially as we (my neuro and I) feel I probably had MS for some years before that.
But I never call my MS “mild”, because I feel that is both tempting fate (it might not be so tomorrow!), and making it sound as if I don’t or shouldn’t have any symptoms - which isn’t true. You can’t see that I’m disabled, but I’m not “fine”, either. If I had to sum it up, I’d say most days are pretty similar to having flu’: I’m weak, things hurt, I’m shaky, balance is dreadful. That’s on a typical day, not during a relapse.
I’m not having a whingefest: I know things could be a lot worse. I do count my blessings that four years on, I’m still walking. But if anyone who doesn’t have MS has the cheek to call it “mild”, I wish I could challenge them to live with it for a week or two, and see how they get on!
Tina
x
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In my understanding, ‘mild MS’ generally means RRMS that has a history of behaving fairly gently - i.e. relapses are not significantly disabling while they last and they resolve completely or more or less.
As Tina says, this is no guarantee against the next relapse hitting like a train. But if my MS had been mild to start with (which it never was, sad to say) I would have taken comfort from the fact that in MS, as in many things in life, the past is often the best available predictor of the future. The fewer and less severe the relapses, the less build up of disabling damage, and that is good news from whatever angle you look. If I had had to choose between mild MS and aggressive MS, it wouldn’t have been hard to choose!
If yours is mild, then hurrah for that, and long may it remain so.
Alison
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Hi Tina & Alison
yes I have been told I’m in the benign spectrum, after 15yrs of going back and to umpteen tests scans ect (u know the like)
mI was told last feb after my fist LP I had MS. At first they thought it was TM but then I relapsed after each child x3 and last ur one came of it own accord like the first, each being different with different symptoms.
this one has effected me quite a lot mentally, I’ve had foot drop sometimes disabling sciatica, mild speech fuzzy head can’t think straight (little things) ive been having some stabbing pains in my right eye of late and I’m a bit worried as I’m glad to say my eye sight has never been effected, my body has had numbness and tingling from my head to feet in various forms ect ect
it’s just so confusing I think me and my family have never wanted to admit I have it and I’m now worrying about the future with it, you can’t see I’m disabled (don’t even like to write the word ) as I’m fit which I pride myself with, I cycle I do insanity classes I walk with difficulty sometimes but never the less I have never had any reason to use walking aids. I sometimes feel a fraud, but It says in black and white I have it, and I do have niggling day to day struggles. But my MS I feel sometimes is no worse sometimes than someone else’s sickness bug, but I have it for life, and like you say I never know how or in what form it will rear its ugly head .
thanks for the chat x
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Hi Lisa,
As far my MS goes, I think I hit the jackpot. I was diagnosed after my second attack - just had pins and needles which would not go away - no other symptoms. And that was 11 years ago. I’ve never taken any medication and still go to the gym and belly dance, although I have given up salsa - those triple turns are a killer.
I know I have gotten worse over those 11 years - I can no longer run and strangely I can’t jump - but I’ve never had what would officially be called a relapse so I understand exactly what you mean when you say you feel a fraud. I have felt that way for years. However I do think it is useful for people to hear from those like us as well as others who are more seriously affected. It is pot luck as to how everything will progress. So in answer to your question, hun, I would say that my MS is definitely of the ‘mild’ version.
Take care
JBK xxx
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Hi Lisa, I understand what you’re saying, as for many years I had what is known as RRMS. Although I had relapses, to other people I could still function more or less normally, nobody could feel what was happening inside, except me. If anyone asked about my MS I would explain it to them as ‘mild’, that was so much easier than trying to explain the whole thing!
Now, thirty odd years later, I’ve moved on to SPMS which certainly, in my case, would not be described as ‘mild’, but because people now have visual aides eg. seeing me in a wheelchair, I still have no need to explain fully what’s wrong!
Please don’t ever feel a fraud! There’s so many variants of this horrible disease & you’re the only one that knows how your MS is affecting you.
Rosina x
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I was diagnosed with SPMS 9 years ago which by definition must mean I was once RRMS. That must have been when they were telling me there was nothing wrong!
I have seen three different neurologists in that time, one of whom is an MS specialist, for all the good that did.
All three have described my MS as mild. I don’t understand that definition and given the well documented unpredictability of the disease I’m not sure they should have given me false hope. I thought mind would mean little or no change in many years.
The reality is, I look well and am lucky in that I feel well and am not in pain. However, when I was diagnosed I was independent, I could drive, do my own housework and light gardening.
Now, I can’t live independently, and haven’t been able to for about six years, I can’t drive. I have dropped foot I suffer from urge incontinence, my balance is rubbish, I lurch around at home on crutches, but can’t walk any useful distance, so it’s wheelchair or mobility scooter everywhere else. I need help getting in and out of bed, and dressing and undressing. I struggle with fiddly things, buttons, hooks and eyes, I can’t manage a knife and fork, I frequently drop things and my grip is poor and my handwriting atrocious.
Whilst I know there are many worse off than me, that doesn’t make me feel any better, and I accept that my MS isn’t as aggressive as some, that doesn’t make it mild.
i know a lady who was diagnosed thirty years ago, and has a slight limp due to dropped foot, but is otherwise well and independent. That to me may well be classified as mild, but I still believe that it can’t be predicted.
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Hi Lisa,
I was dx 7 years ago with PPMS but thinking back I’m sure I have had ms for at least 20 years. I have had various numbness
over the years along with feeling tired but I had 3 children so put it down to that.
It wasn’t until 8 years ago that I started to have mobility problems that I realised that there was something really wrong.
So now I think I have had ms all this time and now it’s moved on to SPMS. I now walk with crutches, need a wheelchair for
longer trips but I still consider myself fortunate that I can still work albeit part time.
I listen to my body and eat healthily.
Dont ever feel a fraud for having ’ mild ms’. Hopefully it will carry on being mild for years to come.
I am very grateful that I wasn’t dx when I was younger as I have had a really good time bringing up my family with no major
health worries.
Mags xx
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When confirming my diagnosis, the neurologist, told me I had ‘mild’ RRMS and then went on to say I had had two significant relapses within 3 months and he would be referring me to a prescribing centre as I needed to start DMDs asap. I therefore immediately mentally deleted the word ‘mild’ from his previous sentence. I don’t know whether he thought he was helping by calling it mild but the fact that, just a month before, I had been admitted to hospital because I could barely walk and was numb from the waist down said to me that it hadn’t been mild so far!
Luckily I do recover quite well from such relapses but only time will tell if my MS is mild or not. In the meantime I’m going to enjoy life while I can and not worry about it too much. Whatever label you give it, it’s still MS and we can’t predict the course of it at the outset.
Tracey x
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Hi Lisa
At prognosis I was told I had a mild form of relapsing MS and “the majority of cases do not develop significant disability quickly and indeed many patients have only mild symptoms in the future”.
That was in 2008.
Before Christmas my neuro informed me that I was probably becoming progressive - my right leg is becoming progressively weaker and not getting any better - but I can still walk 1km on the treadmill at the gym.
I’m like Mags - still working but need a rollator/wheelchair for walking further than from the car to the supermarket trolley!
I’m sure that at the time of diagnosis most RRMS is ‘mild’ (and like Tracey I think the word ‘mild’ is a good word for medical people to be able to tell their patients), but no-one can predict the course of this hateful disease - although I do believe that a positive attitude helps loads!
Emma x
Hey Lisa,
I’ve been told that my Ms is mild?? I know that can change today, tomorrow or over the coming years. I am not on any medication at the moment although I am considering challenging my neuro when I see him in March. It’s the anxiety that doubles me over at the moment. Are you on any meds?
sennen x
Hi Tina I was dx in January of last year and my neuro told me I had mild Ms and he is one of the best in his field world renown is what I was told! However I do feel because I’ve been told it’s mild that I shouldn’t be having the symptoms I’m having not just yet anyway so that scares me and makes me feel at times like im making it up! (My dx was a difficult one seen loads of different docs told them all the same but one told me I had convinced myself I couldn’t see my colours properly!!!) this has had an affect on me. I struggle to understand my Ms partly cos I bury my head in the sand and partly and selfishly I don’t want it! Who does right. But there is my moan about this shitty disease! I need to go cos I have a dog dancing on the bed he needs a pee!! Lol
Morning all. I was dx with RRMS four weeks ago. I’m 62 year old female who got dx from lovely MS neurologist whom I saw under (luckily) private health insurance. Am now going back into NHS system at his hospital (since dx has been made) and waiting for appointment to start Tecfidera asap. The first neuro I saw back in October mentioned ‘mild ms’ when he got results of my first MRI. This came as quite a shock! I’ll always remember that day as I was expecting to be told that I was one of the ‘worried well’, not that I had MS.
My MS neuro reckons I’ve had it for about 17 years (which makes sense, I must say). He said that if I’d been dx then it would have been much harder as there wasn’t the same availability of DMDs. He said that doctors didn’t like telling patients they had a dx of MS then as there was less drug treatment available. I am glad I didn’t know then. I have two (now adult) kids and my sister-in-law had the most severe kind of MS, and passed away from complications a couple of years ago. Things would have looked bleaker then. And of course back then there wasn’t the ready internet availability of so much information (yes, I know you have to make sure it’s from a reliable source such as this site!)
Don’t know about ‘benign’ labels. I reckon that I had a relapse which started last summer and has left me with some residual symptoms. Before that, I don’t know. It’s hard to pinpoint, and I’ve had ups and downs. I’ve thought about this a lot but at the end of the day it doesn’t matter, does it? It’s a label. Yes, it’s annoying when people say ‘oh, you look well’, and I feel like saying 'well, I may do, but I’m having something of a problem with (fill in the symptom (s) here!)
Accepting the diagnosis has been quite a journey (sorry to sound like I’m on 'The X Factor!) - starting from the first neuro up to the confirmed diagnosis four weeks ago. The MS neuro told me that this was what he expected, but being told you have probably got a condition and then having it confirmed are two different things. I guess that part of you hopes there’s a tiny chance that it’s all a mistake.
I’ve been on antidepressants for many years (for something unrelated). Thank heavens for that now. I think I would have been in a much darker place now without them. I’ve a wonderful lady therapist (again for something else) and have been able to have some sessions with her to help me get my head round this MS dx. I’ve got a great osteopath now
The symptoms since the summer are niggly and annoying - it’s different every day but I’m learning to adopt a ‘this too shall - temporarily - pass’ attitude.
I absolutely take my hat off to these people doing marathons and Insanity workouts! Don’t think I could have considered these thirty years ao, let alone now!
This forum is the best. Started reading it in October, whilst hoping and suspecting that I wouldn’t need to be on it in the long-term!
I feel like I’ve become a member of a club that I never wanted to join! Along with a couple of others…!
Best to all.
Louise
.
I’ve had multiple sclerosis for nearly 40 years and frankly my heart nearly burst with joy when the neurologist called me his ‘lucky man’. I suspected benign ms for a number of years. The confirmation from the neurologist was beyond expectations. He also says I could expect the next five years to be as good as the last.
At first Ms sent me on an unwelcomed trajectory. It was an exhaustive way of life in every respect. I felt as if I had just got off a jarring midway ride, confused and disoriented. Any one seeing me at that point, would finger me as an alcoholic, trying very unsuccessfully to maneuver his way. I never thought my cascading inabilities would eventually dissipate through the years to a present day fitter me, a me who can live life unencumbered by a terrible disease.
I fully realise ms may return with a vengeance at any time. But for the moment I want to celebrate good health. It’s a real treat to one who knows his own body may turn on him, again.
Best of good fortune to everyone!
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I do not agree with the labels of MS.I have had it 26 year now and i am not well at all and haven’t been since a bad relapse in 2005, since then i can hardly do anything.My old neuro who retired told me in 2005 i was SPMS of which i agreed as i was ill all the time and never recoverd from a relapse that i had that year.i then had to have an MS specialist,new to me because of the old one retiring who now tells me i do not have SPMS and its benign MS ??? how the heck can you go from SPMS to benign MS,i havent a clue,needless to say i dont see this new one anymore and when i get round to it will go see another,but i dont have much faith in any of them.The label may have changed but i still cant do anything and to me that’s not benign MS.
My first ever relapse i had which led me to my diagnosis left me with swallowing problems, a weak left side and unable to walk more than a few yards and the MRI showed a brain stem lesion on the right Pons.I have had some very bad relapses every 2 to 4 year which left me unable to function for months,and because i just get on with it,when they did see me they think i am fine!!! I even told them i don’t agree that i am benign but then i was made to feel like i did not know what i was talking about, when infact i do,i am my own expert in my own MS.I think i should be now after living with it all these years.
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That term, ‘benign’ should (imo) never be used in conjunction with MS. You have my sympathy Mrs J. You are absolutely right.
Sue
I’m intrigued (envious!). May I ask what title did the Neuro give your MS when you were first diagnosed and what treatment, if any, were you given? Apologies for being so inquisitive.
Long may your current state of good health last.
Enjoy!!
Tippy x
Hi Lisa, I was given RRMS diagnosis 15 years ago and told hopefully as the lesions (5 at the time) were just brain lesions hopefully will stay that way. Well, 15 years later and 4 relapses and many symptoms (numbness, pins and needles and restless legs) on a daily basis I still consider it mildish! I can still walk for miles and, apart from my age (52) don’t suffer too badly with fatigue. After a relapse 2 1/2 years ago I pushed for DMDs (of which I’m on my second one now) and also take vitamin d (which was non existent at relapse!), k & magnesium. MS symptoms vary from person to person and the next relapse could be that bad one. My ethos is to do what I can to help stop it in its tracks. What symptoms do you have? Sharon x