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Refused treatment

My boyfriend has recently refused treatment and has decided to manage his MS with diet and supplements. I do not 100% agree but support him either way. Does anyone else do this/know anyone who does this. Just looking for some advice etc thanks Louise

Hi Louise, Yes, I was only borderline for treatment, and after much angst and deliberation decided to decline - with my neuro’s blessing. However, on the whole, I’m not a believer in diet or supplements as an alternative. The only thing I take that I really do believe will be proved to be important is Vitamin D3. I haven’t tampered with diet at all, as I believe life with chronic illness is hard enough, without denying yourself the pleasures of some of your favourite foods. Please be aware that this is a purely personal view. If I had been relapsing very much more than I have been, I would probably not have declined disease modifying drugs, and definitely not got my neuro’s blessing to do so! So I do think it’s a very personal decision, and needs to be based on individual circumstances - and professional advice. You can’t say it’s always right, or always wrong. Personally, over 3.5 years later, I’ve not yet had cause to regret my decision, and still have the backing of my neuro, but if I’d been relapsing all over the place, I’m not sure I’d have felt there was a choice. My neuro tells me, however, that about half of eligible patients decline treatment, so it’s really not as rare or freakish as you might imagine. Well done for supporting your bf in his choice, even if it’s not necessarily the one you would have made. Loved ones taking an entrenched position about what one should or shouldn’t do really doesn’t help an already difficult decision, so respecting his choice is important. Obviously, if he asks your thoughts, you don’t have to lie that you’re 100% happy about it, but most important is that he’s happy. Tina x

Hi Tina. Thank you very much for taking the time to reply. Just hearing a few other people saying the same makes it a bit easier to understand his decision. x

Louise, I think that an RRMS dx can take people one of two ways (or anything in between): either they want to - very deliberately - throw at it anything that medical science has to offer, or they want to wrest back a feeling of personal control from an out-of-control situation by flying solo and having nothing to do with the medical types. I am firmly in the first camp; your friend sounds like he is in the second. For both camps, I think that the need to feel a wee bit in control again has a lot to do with it, and that means different things for different people.

My MS has been pretty aggressive from the start, so it was a bit of a no-brainer for me - I have been on DMDs from the moment I could get my hands on them. For others, it is more finely-balanced, and our decisions will always be influenced by our individual temperament and circumstances. One thing is for sure: there is little point in trying to force someone down a route that he or she doesn’t want to take. It is hard work, being the support team. He is lucky to have you on his side.

Alison

Hi Louise, I was diagnosed about three months ago with RRMS and at the moment I am going down a similar route to your bf, suppliments and gluten, dairy and refined sugar free…sounds super dull but actually enjoying seeing the alternatives available out there. To be honest I feel great, have had one lot of steroid treatment about six weeks ago and so far am drug free, this said I am totally open to it all if that is what I need to do. Everyone is different, generally as those with ms and early on its hard to see too far into the future, especially when there is soooooo much info being thrown at you, I have found being able to control something a relief to be honest! Having support of loved ones is probably the best treatment available alongside whatever treatment anyone chooses.

There are some great recipes out there, almond paste is very usefull as are deliciously Ella recipes. I cook for a living so am enjoying the ‘research’…and testing!

Hi Louise,

I was diagnosed last November with RRMS (Relapsing-Remitting MS) and had to have steroids for muscle weakness but declined any long term treatment. Although I had had several relapses, I wanted to see if I could manage them myself first and as the future is so uncertain, I didn’t want to be taking drugs/having treatments unnecessarily. I may change my mind in the future but at the moment I am happy with my decision. My partner left the decision completely up to me and supports my decision, even though he disagrees with me on times regarding my MS, he understands that it is ‘my’ disease and I will make the decision I feel is best for me at the time. DMD’s are always available at any point should anyone change their mind.

A lot of people decide they don’t want treatments in the first instance, it is a personal choice and, like I say, they are always available.

red

x

Just a suggestion about helping you and your partner to agree to differ on this in the most comfortable way you can - is it worth sitting down together and identifying the kind of things that would cause you to reconsider? So you both have a clear picture of what pattern and severity of relapses would be tolerable to you and what wouldn’t? It might reassure your partner that you really are keeping an open mind, and that you have a shared framework for thinking about these things, even if you don’t always see them the same way.

Alison

I am currently going through the neuro stuff and don’t have a diagnosis but I was diagnosed with Fibro 18 months ago. The only option given to me was medication and I was like your BF and refused it all as I wanted to explore alternatives. In that time I have explored all sorts of things and found the ones I can stick to, that help me and those that give me a better quality of life day to day. That now also includes strong pain meds. But for me I prefer the idea of taking these when I need them than say amytryptiline(sp) or similar which you have to take everyday.It offers me the feeling of choice!

Part of my thinking early on was that I didn’t want to mask the symptoms until I understood them and the triggers better. As I am told to expect to have to manage this lifelong then I want to minimise drug use until I really need them.

I know with MS it is different as they are DMD etc but I can sort of understand his decision. I also know this may change over time, either a little here and there or considerably. For him knowing you accept his decision even if you will never actually understand it, ( no one can until they have experienced something similar ) is really super important so don’t underestimate how much that in itself will help. x