Hi, Having read lots of things recently about MS, I have come across articles that state some people only have mild MS. I just wondered what is considered mild? Sorry if this is a daft question but my mind is filled with questions & thought I would ask. I am undiagnosed & will be seeing my consultant on Friday to discuss my MRI results. I am getting dizziness, pins & needles in hands, legs & face, buzzing, strange sensation in my left leg, muscle twitches/tapping (all over) but mostly in legs) but my neurological examination was normal (no abnormal reflexes for example). Thank you for taking the time to read this xx
There is actually no such thing as “mild MS” as far as diagnosis is concerned (despite the predilection for some neuros to use the term), but every type of MS can vary in terms of severity. So you can have people with mild RRMS, mild PPMS, severe RRMS, etc.
As far as I know, the severity of MS is often measured via the EDSS, a scale that measures how badly someone is affected in terms of multiple different functions including mobility, bladder/bowel, vision, sensory perception, etc. In practice, there’s a focus on the mobility bit which can underestimate how badly someone has been affected in other areas and the scale is far from perfect, but it gives a quick picture of how MS has affected someone.
I guess the other important factor is how quickly someone’s EDSS is changing / might change. Someone who is just diagnosed, having a lot of relapses but has a low EDSS score may well have more aggressive MS than someone with an EDSS of 7 who has had MS for 40 years, i.e. where will that newbie be on the scale in 40 years? However, there is nothing certain about MS - that newbie may be lucky enough to be relatively unaffected in 40 years - anything is possible with MS!
Karen x
Hya, the trouble with the ‘mild’ dx is it is so subjective. People who are dx and told it is ‘mild’ feel like they are making a fuss about their symptoms which nobody should be made to feel.
At first I was told I had ‘mild progressive’… well it didn’t feel at all mild to me. Yes compared to someone with aggresive MS I suppose it was mild but when you’re unable to work or walk down the street the term ‘mild’ is somewhat irritating, and as Rizzo says there is actually no such thing.
Hope you get some answers on Friday,
Pat x
Thank you for the excellent explanation Karen. I think as a newbie wondering how my life may end up in 10/20 years time I have such questions floating round in my mind. I guess the best thing to do is to come to terms with the diagnosis (if & when it happens) & try not to worry about the future as much as you can (hard as this may be) Thank you once again xx
Thanks Pat. When I first saw the neurologist, he said I had mild symptoms & also that they were likely to be anxiety related. 8 weeks on, having had symptoms everyday to some degree, I don’t think this is mild! Yes, I’m walking, cooking, working (reduced hours) but I feel awful. I’m quickly going downhill in terms of my mood & have stopped going to the gym as my leg feels weak & odd. It has changed me so much in a relatively short space of time. All the best xx
I can empathise with Anon25. When I saw neurologist after MRI he said that I probably had ‘mild MS’. Couple of months down the line I too have symptoms every day. Walking unsteadily, balance and co-ordination issues, speech slurred and halting, writing seizes up periodically, haven’t been to the gym since october as I’m feeling tired and weak all the time. It doesn’t feel very mild to me but I do appreciate that many people have it worse than me. I am also feeling that everything has changed in just a couple of months.
Bob
Hi Anon,
I was reading your thread about mild MS. I just wanted to say that if you feel that you are in relapse, you might want to try taking some B12. I had a really horrible relapse at the beginning of last year which got worse and worse over 6 weeks. I started taking B12, as I thought that I might have B12 deficiency and my symptoms cleared after two weeks. Foolishly, I didn’t carry on as I had a reaction to the B12 as I took too much. I went into relapse again at the end of the year. I have started taking B12, 300mcg consistently over the last month and again my symptoms have improved significantly. I had really bad balance problems, my balance is much better now. I am also taking very high levels of vit D3 not sure if this is having an immediate effect but apparently one of the functions of vit d is to regulate the immune system, so it does make sense. I start on Rebif in the next week, hopefully this will slow the disease progression further.
I feel that my MS is not that bad but as other people have said, how do you know what it will be like in five, ten years time? I think that I have had MS for about six years. I feel that the relapse I had at the beginning of last year caused significant damage. I didn’t have lingering symptoms until last year. At the moment I feel really good. I have very slight balance problems and problems on my left-hand side. Apart from that I am good. Apparently, your condition at five years is indicative of how you will be in ten/fifteen years but once again, how does anybody know, MS is a very unpredictable disease.
Hope that this helps.
Adrian
Hi Anon25
I’m not diagnosed but my neuro (who I’ve changed now) last year said my symptoms were mild. I agree with Pat - ‘one man’s mole hill is another man’s mountain’. Meaning just because it something small in comparison to someone who has terrible symptoms doesn’t mean your symptoms are any less upsetting or debilitating. I had parasthesia/numbness in face /l leg and arm and had bladder and bowel issues then TN and spasms. Yes there are people worse off than me and I knew I was less severe compared to them but it didn’t make my symptoms any less upsetting or diffuclt to deal with. My neuro at the time just told me to get on with it! On a positive I have a new neuro who is much better and my symptoms have generally improved 
I think your motto of not worrying about what will happen next is good. Life is too short to worry about the what if’s enjoy the health you have now and if you end up having MS it doesn’t mean that you still won’t have a good quality of life. A lot of people on this forum are testament to that.
Good luck.
Reemz
X
I haven’t been told my MS is mild but I do feel that it is. I don’t have many symptoms and the ones I do have are more bothersome than anything else. I can’t run but I never ran anyway. I can walk and life day to day is fairly normal but I do feel the MS, each and every day. Be it the numbness in my leg or the shooting pains in my arm or the heaviness in my arm or the lack of energy.
But I guess it’s nothing I can’t live a normal life with so as far as I am concerned, for now, my MS is pretty mild. However I’m nopt confident it will always be that way but I do hope.
Thank you to everyone for responding. Adrian- I have already started taking b12 (though my level on my blood test was 408- within normal limits) & I was diagnosed with vitamin d deficiency (level was 18) & was prescribed high dose vitd3 tablets to take for 3 months. Reemz- thank you. I am really trying my best to be positive but it is so very hard at times. For me not being able to walk, go to the gym, swim, play tennis would all be so upsetting. I am such an active person & this is playing on my mind a lot. Meme- I also hope things stay as they are for you & don’t get worse. I’m dreading Friday. No idea what the outcome is going to be. I hardly slept last night despite trying not to think about it. Part of me thinks- this can’t be MS, the consultant doesn’t think so, then I think, it must be MS, the GP thinks so…wish it was more clear cut! The unpredictable nature of MS makes it so much harder to come to terms with. I’m just glad forums like this exist to make things easier for people like me so thank you all once again x