A-Z

Multiple Sclerosis: friends & family experiences

Decisions about treatment for MS

Everybody we spoke to knows that there is no cure for Multiple Sclerosis (MS). Depending on the stage and type of the illness, various treatments are available which can slow its progress or control its symptoms. Decisions to have these treatments were negotiated between the person with MS and their doctors, often with the active support of their partner. Sometimes all concerned agreed that the best thing was to have no treatment because the side effects might be worse than the symptoms. 

Because MS is unpredictable, a treatment which seemed to work for a while often seemed to become less effective over time and was stopped. Sometimes the side effects of a drug were so bad that the person stopped taking it and wouldn’t have it again. Occasionally, people talked about their relative, partner or friend wanting to try a drug which their doctor didn’t think was right for them. Some people suspected that these decisions were funding related.

 

Ray and his wife have detailed discussions with her doctors about the best treatment for her.

Ray and his wife have detailed discussions with her doctors about the best treatment for her.

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Ray: But your mum’s moved on now to injections, hasn’t she, with a, beta interferon because her relapses were so were, so, coming so quickly they decided that in, interferon was probably the best option.

Sarah: Yeah.

Ray: It was really hard for the first few months for her to get it into her system, made her really ill. But we think that we’ve, we’re certainly seeing the benefits now. She’s not having as many relapses and it seems, as far as we know, there are new things coming almost on a yearly basis. New ideas and tablet form for this, tablet form for that. But we’ve gone into quite a bit of detail with the specialists and they say even they get a, like a tablet form of this they think because this works for her she’s probably better staying on this anyway. Because the other, the other form, mode might not work. But she has a, has a check up every 12 months and, and, and stuff like, so, the, the, you know, the people, they’re on the, they’re on the ball with it. But again we’re pretty, not pushy but we, we want to know because we can do something about it ourselves, i.e. change to a stair lift, change, diff, move, you’ve got to move each time with it and see how see how you cope with it and how you get on really.
Several people with MS had taken part in drug trials. Partners encouraged this, for the sake of their spouse but also to contribute to knowledge for the sake of other people with MS. 

Many also used non-drug treatment such as physiotherapy, oxygen treatment, yoga, massage, reflexology and a healthy diet with fish oils and vitamins. These were all seen as beneficial, though some people said their partners didn’t always do their physiotherapy exercises. Karl said that his partner tried acupuncture when she was first diagnosed but there was no noticeable effect. Some people had tried unconventional treatments such as drinking sunflower oil, but most were sceptical about the value of anything that was marketed as some kind of miracle cure. A few people tried a treatment against the advice of their doctor.

Some people we spoke to very actively looked for information about treatment and used the evidence they found to negotiate particular treatments for their relative. Both Bernard and Paul Z found research articles on the Internet and showed them to consultants. Bernard’s story shows that people react differently to any given drug, and that drug availability changes over time.
 

Paul found evidence that steroids could be given as tablets rather than through a saline drip in hospital. The consultant agreed to try it, with good results.

Paul found evidence that steroids could be given as tablets rather than through a saline drip in hospital. The consultant agreed to try it, with good results.

Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
My wife, when she first started off used to have to go to hospital to have a…the saline drips for the steroids. I looked it up on the internet and there were some research done, Austria or somewhere it was, about giving it in tablet form so you didn’t have the trauma of going to hospital, because with MS it’s tiring. First of all, you used to have to go for three days over a three day period. Then we changed to a different hospital authority, same consultant because we wanted to stop with the same guy because we do rate him very highly and…but that health authority did it where you came for days. Even so, to someone with MS, it’s the fatigue and all that that can be detrimental. So I looked at this. It said you can give it… there’s some research been done where they’ve done it by tablet form over reducing dosage over the week. So, I mentioned this to the consultant and he said, ‘I’ve not read it.’ I said, ‘Well I’ve brought you the article, I’ve printed it all out.’ So he quickly scanned it. He said, ‘Do you want to try it?’ I said, ‘Yes, please.’ And so we tried it. And it worked for her. He’s now using it on other people. Because they’re busy people and anything you can give to help them… and it might not work for everybody but if you find something, or…I’m a great believer…that’s why I’m doing this, is because if it works for us it might work for you because there’s no answers with MS. Everyone’s different. Treatments are different. Try it. But that’s what I say, everybody’s different. You’re an individual, the person you’re caring for, your loved one’s an individual. Don’t be put… allow anybody to put you in a box. And share information with other people. The web’s a great place for doing it. Find the information and ask. 
 

Bernard found an article in the Lancet which supported his view that his wife might benefit from Betaferon. The consultant agreed and she appeared to benefit from this treatment for ten years.

Bernard found an article in the Lancet which supported his view that his wife might benefit from Betaferon. The consultant agreed and she appeared to benefit from this treatment for ten years.

Age at interview: 59
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I wrote to the G… to the consultant, and said, “Why is it that my wife isn’t on Betaferon? Is it because of money? Is it because you’ve selected only a few people? What’s going on here? Is it our post code?” The doctor wasn’t straight with me, and didn’t really reply for a long time. And while he was… while I was waiting for a reply to a letter, let’s say that I’d sent two months earlier, I read an article on line from the Lancet that said all MS suffers benefited. It wasn’t just secondary progressive sufferers, it was all sufferers. And so, with this ammunition in the Lancet, I enlightened him as to what was in the Lancet and he read it and he got back to me and said, “Okay, we’ll go ahead and do it.’ So it then became the, roughly ten years of being prescribed Betaferon, injecting every two days. 

The last three or four annual consultancies we had with the consultant, he would say things like, “Hm, are we sure we’re still right to be on this Betaferon or not? Do I see… is it still helping you or not?” Round about the ninth year of being on it, he decided that perhaps it was best and, with our agreement, too, she came off the Betaferon. But because things seemed to degenerate suddenly... Linda went back... onto the Betaferon, but again there was no instant or readily recognised improvement. So she came off it again. But it did take a bit of pushing and shoving to get this Betaferon in the first place. If I wasn’t acquainted with the Lancet, I don’t think it would have happened. 
Emma’s husband decided which treatment to have, but Emma helped him to decide by finding information and using her scientific background to help him understand it. She also makes sure that he eats specific foods which she thinks will help:
 

As her symptoms progressed, the doctor suggested to Anthony’s wife that she might have treatment with an interferon. She decided against it for the time being, but appreciated having the drugs explained in detail.

As her symptoms progressed, the doctor suggested to Anthony’s wife that she might have treatment with an interferon. She decided against it for the time being, but appreciated having the drugs explained in detail.

Age at interview: 43
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
My wife now sees an MS specialist, as well as our GP, and she enquired of my wife as to whether she’d considered a course of regular medication as opposed to what she does at the moment, which is still the steroids, although she doesn’t have an intensive course in hospital any more. She takes them orally. 

All the time or just when she has a flare up?

Just when she has a relapse she takes still a pretty high dose and then when she’s finished the main course has some less powerful ones to bring her back down off it. And the MS specialist the MS doctor, she suggested that, you know, it might be an idea to start looking at these now. This was after the last episode about eighteen months ago and she suggested that it’d be an idea to look at it in more detail, see if it’s something that you wanted to go with and it certainly wasn’t the scary thing that, as she explained to my wife, it wasn’t the scary thing that my wife thought it was. And the other misconception that we both had was that once you’re on these drugs, that’s it. You can never come off them. That was purely our misconception. We hadn’t read up in any detail, at that stage, about regular courses of medication because it’s not something that, you know, a road that we wanted to go down. And a woman came to the house and she demonstrated the different syringes, needles, call them what you like.

Quite nifty pieces of kit, couple of them, and explained the pros and cons and the different ways that you can administer them. And also the understood effects of how much it would, what likelihood it would be of reducing another relapse. And I for one didn’t know that there were so many different, because all I’d heard about of was beta interferon That was it, you know, and there’s more than one type of that plus other different regular medicine you can take. Having it demonstrated was a little bit not scary but made my wife a little bit apprehensive because it’s something that you have to do religiously and, at the end of the day, you’re sticking a needle in yourself and giving yourself an injection when the only way that’s ever been done before is when you’ve got a temporary illness of some kind and somebody medical does it for you rather than having to administer it yourself. But we considered it, ruled a couple out on the spot because they just weren’t for her, for one reason or another. But having thought about it, she decided that again, maybe it’s her stubborn streak, maybe it’s her desire to manage as much as normal as much as possible, she decided that it wasn’t for her, at least not now, but the demonstration was valuable in that at least we then had a proper awareness of what was available and what the pros and cons were and, although still not like something you really want to be doing every day or every three days or whatever, it wasn’t quite as scary as we thought it was going to be. At least now we know the options that are there should or when it becomes necessary to take them on a regular basis. So it was useful in that respect. 
Sometimes the ability to pay for treatment, or to get funding from the relevant part of the NHS, was important. Robin advises not to buy your own medicines, but to get them on prescription; but Betty, with shrinking savings and little income, has to get low dose naltrexone on a private prescription and was, at the time of the interview, waiting on a decision on whether the PCT would fund cannabis spray (Sativex) for her partner. Jeff’s wife had to go to a different city for botulinum toxin (Botox) treatment. It was uncertain for a while whether Emma’s husband, a non-EU citizen, would be eligible for treatment. Stella feels grateful that, despite the drop in their income since her partner had to stop working, they can still afford to pay for alternative therapies. Kay Z’s husband could get beta interferon from America (through relatives living there) before it was available in the UK.
 

Jeff and his wife were very pleased with the effect of Botox injections on her painful feet, after initial difficulties in getting funding for the treatment.

Jeff and his wife were very pleased with the effect of Botox injections on her painful feet, after initial difficulties in getting funding for the treatment.

Age at interview: 62
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
One thing I did forget to mention is my wife mainly suffers from pain and fatigue. And because of the paralysis of some nerve endings, her left leg and toes are splayed out, almost like claw-like, and that made it difficult for walking. But we had recommendations to go to a podiatrist and make a support there. Which wasn’t quite so good. But we were then told that there was a possibility of using Botox. So rather than getting rid of your wrinkles, whatever, you have Botox in, in, your, in your feet. But in our local county they only injected Botox into the large muscles and not the small muscles affecting toes. So we went to the nearest large city, where they have a training medical hospital, and they used to every three or four months give injections into the, the base of the feet and muscles affecting control of toes. 

And that seemed to work very, very well indeed. It got rid of the spasm there. And my wife said she didn’t really feel the injections at all. Which amazed the registrar or the specialist there and, and the trainee doctors there as well. And so it helped my wife and it, it helped the trainee doctors as well. They were very grateful they were allowed to inject people without them screaming, “Ow, ouch.” And I suppose we had that treatment for about two years. And, and now a lot of the splay seems to have gone. So we have stopped it now. But we were told we, get in touch if it ever becomes a problem again. But the, the people there were so friendly, so wanting to help, and absolutely brilliant. The only problem we had was initially in getting the funding from our county to this city hospital, because it’s out of our area. But after, you know, a few months, probably about six months, it was granted. And we didn’t really want to drop out at first in case they’d say, “No, you can’t have it again.” So we kept it going for the two years I think.
 

Betty has got her local MP involved in discussions about funding to make cannabis spray (Sativex) more readily available in her area.

Betty has got her local MP involved in discussions about funding to make cannabis spray (Sativex) more readily available in her area.

Age at interview: 58
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean I’ve been trying to get my partner this drug for a year, Sativex. His consultant wants him to take it. So for a year, what I’ve heard is the consultant has to get in touch with the trust of the hospital, if they say yes it then has to go to the PCT. If they say yes then he can have it. But unfortunately he’s still waiting. I haven’t heard from the hospital trust so I’ve now got our local MP involved because it’s not only my partner it’s all the other people in this borough. Okay it’s not a cure but it might help a bit because all of the pills that are prescribed, they help that much and it would be so nice if something else could be added and there was a few more normal days because it would help him, it would help me thereby saving money. That’s my logic and I’m going to become a politician.
 

Kay and her husband were glad to have beta interferon, although it was expensive to buy it from America, when no treatments for him had been available in the early years of having MS.

Kay and her husband were glad to have beta interferon, although it was expensive to buy it from America, when no treatments for him had been available in the early years of having MS.

Age at interview: 49
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
As far as treatments are concerned, we’ve always had really supportive GPs and I, and I’ve felt as though the, the consultants that we’ve had access to as well have been really helpful. Initially there didn’t seem to be very much that they could do. And that’s frustrating. Because as long as you’re doing something, you don’t really matter what it is, it just feels as though you’re making progress and, you know, you can have that fight, as it were, against the disease. So the early years were the hardest. 

Then beta interferon came on the scene as a possible treatment. Because my husband has relatives abroad, including New York, we had managed to obtain that privately from America, through his brother, seeing a consultant there, for a number of years before it became available in the UK. Which was very expensive obviously, but it was the right thing to do at the time for us. And when it did become available in the UK, obviously we came back and had it here. That involved injections in to his thigh, which was painful, frustrating, difficult to administer because he wanted to do it himself. I have to say my husband is perhaps the most independent person in the world. And, yes, we were quite glad in a sense when that particular chapter came to an end, because ultimately his body stopped responding. Another example of how you adapt is that you also adapt to treatments, and they become less effective quite often. 
Some people were optimistic about the prospects for new treatments based on scientific research. Treatments that weren’t based on evidence were generally disapproved of but some people said their relative had tried them, or wouldn’t discount trying them, anyway. Ian’s wife decided against her doctor’s advice to have a controversial treatment to widen the vein which takes blood from the brain (CCSVI).
 

Ian’s wife wanted to ‘explore every avenue’ and decided to go ahead with CCSVI treatment even though her consultant thought it unproven and dangerous.

Ian’s wife wanted to ‘explore every avenue’ and decided to go ahead with CCSVI treatment even though her consultant thought it unproven and dangerous.

Age at interview: 57
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, we had a meeting with a, a new MS consultant at the, at the hospital that we use. And he was very scathing about the CCSVI procedure in so far as it, it wasn’t proved, it was dangerous. We believe at that particular point someone had, had actually died. But that was from the use of stents. They did use stents rather than the venoplasty. But our counter-argument to that is that it’s a medical procedure, so of course it’s going to be dangerous. Every medical procedure is dangerous to a certain extent. Also the fact that we’d been driven to this particular point by the inactivity of the medical profession, to be perfectly honest. Again seemingly because it’s not a particularly ‘sexy’ disease. 

And so you, you do, when you’re in that particular situation you, you explore every avenue. We know that it’s a disease that there is no cure for at the moment and so you try everything you possibly can. And I think at that particular point, although we’d been considering the CCSVI as a result of the, the conference that we went to in April 2010, I think inwardly at that particular meeting that we had with the, consultant, I think that just basically reinforced, “Well, stuff this. We’re going to go for this irrespective of what you say.” There’s no danger to me physically. Obviously the, the, the danger is, is, with my wife. But she obviously is keen to take it, take it further. 

And I think to a certain extent it’s not, I can’t actually remember, I think it was, I think it was only a local anaesthetic, so there weren’t, you didn’t take the step to a general anaesthetic. And she was quite, quite prepared to, to take that on board. So that really was the deciding factor I think in, in both of our minds. We didn’t really discuss it to that extent, but I’m sure that she, she was of the same opinion as me at that particular stage, to say, “Well, stuff it. We’ll, we’ll do this ourselves. Because we’re not getting any support from, from the medical profession.”

 
 

Emma thinks that non-scientific treatments are not valid, though she understands why people try them hoping they might work.

Emma thinks that non-scientific treatments are not valid, though she understands why people try them hoping they might work.

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Some of the treatments that are written about on the web can be a bit controversial. Have you come across any controversial treatments in your reading?

Controversial, in terms of?

Whether they’re supported by enough research?

I have come across, and I don’t believe in them straight away I understand, for instance, stem cells there is a lot of stem cell... companies, so they call, that they inject stem cell into the cord, into the spinal cord and, and supposedly they do benefit people. Now, I can understand that, I will do anything for my husband so I can understand it from that point of view. From the scientific point of view and, that is the thing, now my background is scientific, I don’t have, I don’t do any credit to that people. 

Would I try it? Maybe, it, if things goes very bad I try anything but that is because I don’t, I, for some people they say that it has worked. Whether that is true or not I don’t’ know. But it’s like you try anything, why not, just try it. It might get better. From the scientific point of view, for me anything that hasn’t been hasn’t been proved through scientific exercises it is not valid. So stem cells, goat milk no, I don’t believe in them. No, I can’t. However, I do think that all this research takes very, there is a lot of bureaucracy involved. So, Fingolimod which is the first pill that has come out it, it was approved by the European Medical Pharmaceutical Agency in January. If we’re lucky in the UK we’re going to get it by December this year. In Spain they’re still waiting for, to establish the process of approval in each country. So there is a lot of things that can be done on that regard. 

But whether, would I support controversial treatments? I just think it’s rubbish. And I hate the people that can make money out of it. 
 

Anthony and his wife are ‘realists’ with their ‘feet on the ground’ when it comes to expectations of treatment. But they are ‘open minded’ and were glad to try low dose naltrexone on the GP’s recommendation.

Anthony and his wife are ‘realists’ with their ‘feet on the ground’ when it comes to expectations of treatment. But they are ‘open minded’ and were glad to try low dose naltrexone on the GP’s recommendation.

Age at interview: 43
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think there is there’s always the tendency to clutch at straws of anything that you feel could help. We’re open minded people. The end justifies the means with the way I would look at these things. I don’t really care as long as they work and then the realist side of you would kick in and say, “Well, hold on. Either this thing isn’t proved yet or it’s some old wives tale or whatever.” 

We did have something a little like that in that there’s a drug called naltrexone, which I seem to recall from by chance, it was found in some studies to have a positive effect on MS. Now, it was actually something that was suggested to us, would you believe, by our GP, who had had experience of another MS patient, who had tried this naltrexone and found it to be enormously beneficial and, although he was very guarded as medical people are, he says, “I’m not saying that this will do anything at all. All I’m saying is it worked for this person. It’s up to you if you want to try it or not.” Which we thought was good of him to be open minded enough to say that, you know, there is only a small amount of medical back-up for the idea of this working. 

 It’s like circumstantial evidence, if you like, but he mentioned it to us and my wife tried it for a while. Any benefit that she got was possibly the placebo effect. I don’t know. But it was worth a try and reading about it, again if you go on the internet you will find opinions as opposite as you could possibly imagine. Which do you believe? But our GP’s suggestion was, “This is harmless because you take it in such low doses.” In fact, it’s called LDN, is the treatment, low dose naltrexone and it worked for this other patient of his so he suggested to my wife, you know, “You’ve got nothing to lose, you might as well try it because in such low doses it won’t it won’t do you any harm.” 

So she tried that for a while so I suppose that you could say that might come under miracle cure sort of suggestion. But apart from that, I’d have to say really that we’re realists and, you know, if there was a miracle cure then how come there’s so many people with MS and getting worse with MS. I’m sure there’ll be a medical breakthrough at some point. You like to think so but, at the moment, I think we’re more realists than dreamers. You can have hope without grabbing onto everything that’s suggested, every weird and wonderful cure that has been mentioned for this. So generally speaking, no, we have our feet on the ground with it I think you could say.
 

Louise is optimistic about stem cell research and future treatments for MS. She thinks ‘alternative’ therapies can make you feel better psychologically, but don’t help the medical condition.

Louise is optimistic about stem cell research and future treatments for MS. She thinks ‘alternative’ therapies can make you feel better psychologically, but don’t help the medical condition.

Age at interview: 61
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
What sort of notice do you take of news reports that talk about new treatments or, typically they would be about treatment wouldn’t they, how do those impact on your consciousness?

Oh, very much so, especially if it’s good news obviously, The recent sort of developments around stem cell research now and the fact that they really feel that in a few years time we’ll be able to reverse the damage to myelin and all those kind of things that you know, it kind of gives you a lift and you think well, you know, so much has been done in the last 15/20 years, you know that you think that eventually it’s like a cure for cancer isn’t it, you know, there’s so many different parts there and you know there’s so many different pieces of the jigsaw but one day that they will find something and it, you know, it will be treatable. And also the research into the causes and stuff Yes, I read all of that and, you know, the genetic component of it, obviously as a parent you kind of think well you know, how strong is that and so on. It’s very important yes.

And what are your views on alternative treatments?

Well, I think with alternative treatments, it’s not just alternative treatments for MS it’s alternative treatments for everything, really, is that I tend to be a little bit sceptical. I mean, I remember when I was ill with depression one of my colleagues who was very sweet and came and gave me a massage, you know, and wanted to know how I felt afterwards and I felt fine and I think that’s how alternative methods, medicine, they make you feel good because they give you attention and so on but I don’t, in my heart of hearts, I don’t believe they do anything actually for the medical condition. They just, perhaps, make you feel able to cope with it on a psychological basis. They make you feel better.

Some of them I think give people false hope, some of the wackier ones using blood transfusions and all this and I think sometimes when they demand money I would say don’t go there because I really have faith in the British medical profession. I think, you know, the neurologists are so, they’re the people who know what they’re talking about, you know, and if they recommend something that’s fine. I mean physiotherapy obviously is different, you know, I mean, my son’s benefited from physio, and I know a lot of people do, but I think alternative things well, you know, be a bit sceptical.
 

Kay travelled with her brother to Holland for him to have stem cell treatment, because ‘you just want to do anything to try and make them better.’

Kay travelled with her brother to Holland for him to have stem cell treatment, because ‘you just want to do anything to try and make them better.’

Age at interview: 38
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
There’s all kinds of treatments talked about out there and indeed some of them we have tried. We went to Rotterdam in 2006 for stem cell treatment. My father and my brother and I travelled there. It was quite a difficult trip, getting on and off planes and trains and into hotel rooms, and even up to the clinic. But we went and tried it because you try anything and you just want to do anything to try and make them better or at least improve their quality of life. We also tried another treatment, a spray treatment, which initially seemed to have some improvement in his cognitive actions, I don’t know if that’s the right word, but, you know, after a while it seemed like it really wasn’t doing anything. So that was stopped. 

[Name] doesn’t have any kind of treatment now for any of his MS apart from things to, to deal with the symptoms, things to help with spasm pain. He had some Botox in his legs earlier on this year to try and help with that as well. And apart from day-to-day painkillers and paracetamols and antibiotics as required that’s all the treatment and, that my brother gets now. I feel it’s felt that there’s nothing that they can do, and they’re basically managing him and managing him towards the end. And that’s quite difficult when you read magazines from the MS press talking about this amazing treatment and that amazing treatment and there’s all kinds of people featured that are, “I’ve got MS but, hey, I can climb a mountain.” And they don’t tend to feature so much of what it’s like to live with having such, having it so severely. 
Some relatives had heard about people who had ‘overcome’ their MS. Most thought that this probably meant they had a mild form of MS with long periods of remission, rather than that they had been cured. But it mattered to Stella to hear this, ‘Because we were always told it was something that you have, and you need to make do with it, and you need to accept it. Which is true as well. But then there’s always hope. Always, for anything’.

Last reviewed March 2020.
Last update July 2018.

donate
Previous Page
Next Page