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Can Anyone Help Answer Some Queries Please?

Hello Everyone I’ve recently had an MRI scan showing lesions which my neurologist has said are consistent with RRMS, although he has sought to allay my anxiety by saying he feels confident my current symptoms will ease and I have a benign and mild form of MS. I know that’s incredibly good news. But, me being me, I’m finding it difficult to be as positive as I should but I’m reluctant to question him too much as I know he deals with a large number of patients with varying degrees of MS and I feel he may think I should be more grateful! I wondered if anyone else has been diagnosed with a mild form of MS and if so, how long their symptoms lasted? I’ve had pins & needles & numbness for 8 weeks now and I can’t tell if its getting better or whether its just moving around to new parts of my body! One of the reasons he cited for a RRMS suggested diagnosis was that I told him my feet were feeling better, but since then my head has gone numb! Also, I’ve been told my symptoms should clear without medication, but I need to take vitamin D3 from now onwards. How long does it take for vitamin D3 to start having effect? My dosage is 5000iu daily. He did say he could prescribe a course of steroids to clear up the symptoms but as I’m not in pain or distress or real discomfort then better not to. Lastly, I wasn’t sure how he was so confident that these symptoms won’t develop more quickly into something more troubling. Obviously, he’s an MS expert so Id feel a bit cheeky questioning his opinion when I’ve no real understanding of it myself. But…the one big message I seem to get from MS is that it is a very unpredictable and individual disease which can seem indiscriminate and random in its progression. I wondered if anyone else had an insight into this? Thank you - sorry if its a bit jumbled and incoherent but that sums up my brain at the minute Jane xx

Hi there and welcome.

I dont have an MS dx although it may be on the cards. You are right in saying that MS is a very unpredictable and individual disease which can seem indiscriminate and random in its progression. My neuro did at one time suggest that I have had a benign MS since 1990 (first attack of l’hermittes). Second attack in 2008 which left me with spasticity in one leg. I do not have a dx as do not yet fill all the criteria. There are more experienced folk with MS on this forum who dont like that way some neuros use the term ‘benign MS’ because there technically is no such criteria (ie only RRMS, SPMS & PPMS). If you are RRMS then DMDs would help you but they only give them to people who have had 2 clear relapses in 2 years. Although in some countries they give them as soon as RRMS is dx in order to prevent another relapse. If I was dx with RRMS then I think that I would really push for DMDs, I wouldnt want to use ‘a wait and see approach’

Take Care

Moyna

Hi Jane, as Moyna says, ‘benign’ or ‘mild’ MS is not a ‘type’ of MS… although many neuro’s use both terms.

Basically it is that you have RRMS which at the moment is presenting with mild symptoms. It may indeed stay that way, but as you already know there is no way of really predicting this. Many, many people remain with mild symptoms and can continue to work etc etc.

The reason why the neuro doesn’t talk about how things might progress is because they simply don’t know.

I don’t have RRMS so I will leave it to others to discuss the DMD’s you should or shouldn’t take. Vitamin D may help and certainly might help fatigue, but I think it can take months to feel any benefit.

I think one of the problems I have with the ‘mild’ and ‘benign’ descriptions is that it makes you think that you are making too much of your symptoms and feel guilty if they get you down. All things are relative… and what a neuro might describe as ‘mild’ may be a huge problem causing distress for you.

One very useful attitude to have with any type of MS is ‘one day at a time’. It’s no use at all trying to second guess your MS and spend time thinking ‘what if?’. None of us know what the future holds and it doesn’t help thinking about it.

When you think about it, that’s the same for everyone on the planet… nobody knows what will happen tomorrow… it’s just with MS that ‘not knowing’ is more in the spotlight.

Keep in mind that huge advances have been made in treatments, esp for RRMS, and that huge amounts of research is going on all over the world. New treatments are just around the corner… and there is even talk of a cure for the first time in history.

Being dx with MS is a hugely traumatic experience and it takes time to get your head round it. Give yourself lots of TLC and try and talk about your feelings to someone… it helps. Also, I can promise you, this first stage of dx will get easier in time.

Hope this helps,

Pat x

Hi,

I am one of those Moyna has referred to, who dislike use of the terms “mild” or “benign” for new diagnoses, because there is simply no way of telling. I don’t believe your neuro can see into the future, any more than lesser mortals, so it will be some time before it becomes clear whether your disease is “benign” or not - only time will tell.

In case you don’t already know (he doesn’t sound as if he was great on the explaining front) RRMS is characterised by episodes, or attacks, known as relapses. These can vary from a few days, to weeks or even months in duration. I’ve personally had relapses that lasted a year, although I don’t mean there was no improvement at all before that. Just that it took a year to recover as much as I was going to.

The attacks can also vary widely in frequency. They have to be at least a month apart, otherwise they’re regarded as still part of the same attack, but they can be as close together as only just over a month, or as far apart as many years.

Neither severity, not frequency, nor duration of future attacks can be predicted at future diagnosis, although the best and only indication we have is how aggressive the disease has been so far. If it’s thought you might have had it for many years prior to diagnosis, but you still have relatively unimpaired function, it might explain the benign/mild forecast, although it still wouldn’t be a cast iron guarantee.

The reason he thinks your symptoms will ease is that’s the way it goes, with RRMS - most people do recover well from attacks (relapses), especially the early ones. However, as time goes on, after successive attacks, a lot of people find not everything gets better completely - i.e. there is residual damage. So remission does not necessarily mean feeling fine, but still better than you were at the height of the attack.

There is increasing evidence that D3 supplements may reduce the likelihood of further attacks (many people with MS also have very low vitamin D, and deficiency has been linked with increased probability of a new attack…) However, they will not work to address existing symptoms. Think of it as taking them for insurance, but not to treat symptoms - i.e. don’t expect them to make you feel better.

If your attack is non-disabling, he’s probably right about the steroids. They are pretty heavy-duty stuff, and can have some unpleasant side-effects and complications of their own, so letting nature take its course is not such a bad idea, if you can be patient enough to do that. Steroids can improve the speed, but not the extent of recovery - i.e. your recovery will still be as good without them, but just take longer. Steroids don’t impact the severity or progress of the disease at all, so you’re not affecting your future prospects by not having them.

I’ve so far (diagnosed person) got away without having them at all, but would reconsider if I had a very disabling relapse. Obviously, if things are very bad, you want to recover as fast as possible, but if they’re livable with, the disadvantages of steroids might outweigh the advantages. It’s not as fashionable as it used to be for steroids to be doled out for every relapse, because of the possible long-term health consequences. They’ll tend to keep them for if it’s severe.

Moyna is right that the usual qualifier for disease modifying drugs (DMDs) is two clinically significant attacks in two years. If you haven’t had two attacks in that time, then you don’t qualify, full stop. If you have had two attacks, then there still could be room for interpretation about whether they were “clinically significant” or not. This isn’t defined in writing, and some clinicians treat “clinically significant” as meaning “disabling”. So if you’ve had attacks, but they weren’t disabling, and didn’t require hospital admission, not every consultant will think they’re clinically significant enough to qualify.

Hope this helps,

Tina

Thank you for taking the time to reply to me. There’s such a lot of information for me to get my head around. From what you specify the criteria to be, Tina, I don’t qualify for DMDs as I had what I realise was my first MS attack 7 years ago when pregnant and like you, Moyna, I experienced l’hermittes. At the time a neurologist thought it was probably just pregnancy symptoms (heightened by hormonal anxiety!) Since then, nothing until now. Thank you Pat for your sage advice. One day at a time is just about all I’m capable of and you’re completely right that you never know what’s around the corner but if its not here right now then why waste time fretting. I wasn’t aware that vitamin D3 wouldn’t help alleviate symptoms so as I said, there’s a lot for me to take in. Many Thanks to you all again for your constructive, informative and most importantly, kind advice Jane xx

Hi Jane,

If your neuro goes along with your own view that seven years ago was probably your first attack, and you’ve been OK up 'til now, it probably helps explain why he’s used terms like “mild” and “benign”. Seven years, with nothing very drastic happening, does not indicate an aggressive disease course - although, unfortunately, that can change. But how it’s behaved 'til now is still the best and only guide we’ve got to how it might behave in future.

I would imagine, from his comments, he could not see extensive damage on MRI either - which again, if you’ve had it seven years or more, is encouraging.

You’re right that if you’ve had only two attacks, seven years apart, it’s unlikely you’d qualify for DMDs anyway. But it’s important to get any new attacks on record - especially if they strike within the next two years, as it might change your options.

Hmmm, Pat seems to think you might feel better on the D3 supplements. I do take them, but have never noticed any difference. I just take the view they’re cheap, they won’t harm (except in massive overdose, which is unlikely, if you’re taking them on medical direction), and they might possibly aford an element of protection.

I also try and get vitamin D the natural way - i.e. modest exposure to sunlight, without burning. In Winter, the sun in the UK isn’t strong enough to make sufficient vitamin D naturally, but in Summer (if we ever get one this year!), just 20 minutes a day, with bare arms, should be sufficient. You don’t have to grill yourself all day, and risk skin cancer. A short walk, or a cup of tea in the garden, is enough to boost your vitamin D.

Tina

x

Hi again… on the Vitamin D thing… I’ve been taking them for a couple of months (5,000 iu) and not noticed any difference at all. I should have made that clear.

I have read that some people find they have less fatigue… so I live in hope… but no, personally no difference as yet.

Pat x

Thanks for the advice, Tina. I think I misunderstood vitamin D3 to be some wonderpill! I’ve subsequently read, Pat, that it can take up to 6 months to feel improvement so I hope your fatigue lessens eventually… This forum really is a lifeline for those us us who feel somewhat adrift xx

You’ve already had great advice so I’ve nothing to add except hello and welcome :slight_smile: and that you’ll probably only notice a difference by taking vitamin D if some of your symptoms were because you were deficient in vitamin D. It’s still good to take it though - it seems to have a protective effect.

Karen x