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Anyone else got mild MS?

Hi Had my neuro appt today as I have been having alot of problems with my back. With that in mind, I expected to be examined, listened to, or both. Instead I was told I had mild MS and basically to get on with it. When he spoke to me he spoke to my chest. The rest of the time he was talking to my OH. This is not the first time he’s annoyed me. In fact he’s so unprofessional I’m pretty sure he got his medical degree on eBay. This leads me to my initial question, does anyone else have MILD MS? Suz xx

yes

I was once told that I had the most benign case of MS that had ever been seen. I would dearly love to meet that neuro and hit him several times with my walking stick.

Then run him over with my wheelchair.

Karen x

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Hmmm. 'Bout the same number of people as those who are “a little bit pregnant”, I’d say. What the heck IS “mild” MS? I think there’s only “doing well at the moment” or “not doing well at the moment”. Nobody knows how it will go. I’d say, touch wood, I’m in the “doing well at the moment” category, and it sounds like you are too - which is good. But I don’t see that as being quite the same as “mild”. Not a day goes by that I’m not aware I have symptoms, and I’m sure the same goes for you too. And I’m aware that, like investment products, “past performance is not a guarantee of future performance”. Although my neuro has made clear that he’s pleased with progress (or comparative lack of it, in disease terms), he’s always been scrupulously careful to avoid the word “mild”. He only says: “Let’s keep our fingers crossed!” I was mad when a friend called it “mild”, as most people are NOT wheelchair-bound from Day 1, but that is hardly proof of it being “mild”. However, the misconception is more excusable, from a layperson. I wouldn’t expect to hear the same patronising tosh from a consultant. I’m not surprised you were annoyed. Tina x

Yes was told that I had ‘mild PPMS’ and at another time ‘benign PPMS’… (benign and progressive… hmmm)

This was after I had given up work due to terrible fatigue, was walking short distances with stick, was using mobility scooter for longer distances. If I listed symptoms this post would go on… and on… and on…

I suppose compared to some people with MS my symptoms are ‘relatively mild’ and I suppose neuro’s see people who are very severely affected and so in comparison it may seem ‘mild’ to them… but they have no idea how, when you are dealing with disabling symptoms on a daily basis… the word ‘mild’ can seem like a slap in the face.

Pat x

The term “mild MS” is highly technical and only used by experienced medical practitioners. My understanding is that it means you are still alive and aggressive types tend to be EDSS 10, or above.

If your back is playing up a bit it might be worth trying acupuncture, as I have found this to be quite helpful in the past. MS Therapy Centres usually offer this treatment at reasonable prices.

This annoys me too !! MS can be ‘mild’ one minute - and diabolical the next ! The trouble is that if friends and family get this word ‘mild’ in their minds, they think you are OK and can function normally. Its a very dangerous word in my view.

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I think my MS was so mild for years that I didn’t even know I’d got it, the result was that my diagnosis came straight in with SPMS. Some people get through their whole lives not knowing they have MS, it is picked up on post mortem.

As others have said it is only a label, at the end of the day MS is MS and we have to deal with its challenges.

It could have been put more tactfully but I think there is a lot to be said for making the most of everyday as the future is unknown. That is true for everyone, not just those with MS.

I remember my neurologist advising, ‘Don’t make MS your hobby.’ Which was, I guess, a different (but much more helpful, I think!) way of saying, ‘You are able to function relatively normally at the moment, so just get on with it and don’t let an MS diagnosis turn you into an invalid.’

I do think the ‘mild MS’ diagnosis made any way than post-mortem is a bit meaningless. Most of us, unless struck by catastrophic symptoms from day 1, have ‘mild MS’ to start with. Some lucky people stay that way.

Alison

x

Hi there Pat

I have to say that I probably did have 'mild MS for over 20 years, I had lots of symptoms, easily explained by my age and my gender and hormones. I had burning legs for a good few years and came to ignore them too. Especially when my NHS physiotherapist told me there was nothing to be scared of and if I just did the exercises they would get better. It wasn’t until 2007 that it started to get bad and could no longer be ignored. I seemed to have gone from R/R to S/P very quickly like some other people on this site.

By the way Neurologists are keen to make things ‘not MS’. I had a frozen shoulder a few years ago followed by another frozen shoulder and my Neurologist at the time said it was definietly not to do with MS. Funny that I seem to have spasms in my shoulders at night as well as my legs; proving to me at least that it is all connected. He also said that the virtigo I had was migrane and the MS hug was not an MS symptom. I have learned from this that Neurologists do not always know about MS symptoms unless you have a Neurologist who specialises in it.

Take care

Wendy

x

I think it’s a label to say ‘not eligible for any DMDs’ … followed by a very small yet.

My neuro told me my MS was mild soon after I was diagnosed. I have to say I was pleased to hear this! On a scale I was and am at the lower end, thats not to say I’m not aware that this could all change any minute, it certainly put things in perspective for me. I have started on DMDs, so it hasn’t hindered me in any way on that side. I feel incredibly lucky I can go about my everyday life with only some pain and discomfort in my feet, I have to take it a bit easier than before.

Hmmmm - well, it’s not a bad thing to have ‘mild’ MS. I know things could be a whole lot worse. He must be in the wrong because when my MS Nurse called me yesterday to find out how it went, she was livid. I hope my case stays ‘mild’ and I’m touching all wood in sight!! The other thing I forgot to mention is he told me he would advise me to come off DMD’s completely as my condition could manage without. Yet, the MS specialist told me I was relapsing quite alot and he would advise me to go on 44 mcg of rebif. The normal neuro kept saying I have to be careful what I say about MS. Well, for someone that had to be careful, he sure had alot to say.

My neuro told me to come off Copaxone because it wasn’t working for me any more (this was at the beginning of the first relapse I’d had in more than 3 years). In the following 15 months I had back to back relapses and went from an EDSS of maybe 1.5 to 6. If I could go back in time, I would do ANYTHING to stay on Copaxone.

Btw, how the hell can your neuro know that your condition can be managed without DMDs? Has he got a DMD-less clone of you hidden in a cupboard somewhere that he can compare you to? Utter rubbish!!!

Karen x

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Suzie, can you arrange just to see the MS specialist in future and cut this muppet out of the picture entirely?

Alison

x

Hi,

The whole thing about the DMDs is that they are a sort of insurance policy for the future. Just because you are “mild” at present and not having many relapses suggests to me that the DMDs are working for you at the moment. Who knows how the MS might behave if you weren’t on them?

My first neuro told me I had ‘benign’ MS after I was only diagnosed a few months!!! This was total bollocks as benign MS can only be diagnosed retrospectively after about 10 years if the MS has been very inactice over that time. I was told I didn’t need DMDs.

5 years later I am totally reliant on a motor scooter, need assistance every day from a carer and am now on a very agressive form of chemo to slow things down. I am not trying to scare you but MS is a very unpredictable beast and I wish to God I had been given DMDs early on. I might not be as bad as I am if that had happened. Yes, your MS might not be causing too many serious problems at the moment and touch wood it continues to be that way but I would be very cautious about stopping the DMDs.

I would ignore that neuro and stop seeeing him and stick with the MS specialist. I changed from my old neuro to a specialist about 3 years ago and it was the best thing I ever did.

All the best,

Belinda

I think you are right, oh how the Neuros were so pleased to tell me I was mild and it would all go away. 2 years later I was on Betaferon. As I’d changed hospitals and given another MRI

Wendy

x

There is no denying that the neuro is a total fluffing eejit! Thank god I only have to see him once a year :slight_smile: x

I’m doing very well at age 65 (35 years post diagnosis) Always able to bounce back after every exacerbation following methylprednisolone infusions. Fortunately, the ms has saddled me with a minimum of residual affects, Today, I try and maximise fairly good health into even better health by exercising, it’s made a huge difference. Although I know this disease could turn active at any moment, I’m thrilled all appears to be going well. I’m oh so appreciative ! i wish everyone with the same good luck.

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I would love mild MS. I’m sorry but if you consider the effects of your MS are mild please don’t complain but rejoice. I’m dealing with my MS but it has significantly reduced the quality of my life. That said I’ve met many other people who’s journey is far worse and far more “challenging”. If you have the good fortune to have only “mild” MS then be grateful and enjoy every day it continues because when it does get worse its not much fun! Health & happiness Adam