Dietary influence on MS decline?

Everyday living
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Hi - this is my entree post and it is my daughter who has the MS.
Please bear with me, as this is a long post. My apologies but I am seeking advice, guidance and direction. Thank you to anyone who is willing to read it.

My daughter was diagnosed with MS some 14 plus years ago, when her only child was just 2 years of age and for the majority of her life since then, she has lived with her family elsewhere and as, as per her personality, been really private about how the MS has impacted on her life. Whenever I have seen her, she has not really wanted to talk about MS and how it impacts her life, she has wanted to just get on with it, without medication, supported by her diet and self knowledge and often became quite frustrated with me not knowing about stuff.
I must admit, I was working full time and also travelling once every 6 weeks/month over 300 miles to spend a few days with my very elderly mother who was also going through a number of health issues too initially age onset, then T Cell Cancer and then subsequently Alzheimer’s. My capacity to take on more information than what I had to for my job and my mum was pretty limited and so my knowledge of my daughter’s MS was very limited too. She seemed to be coping really well, through her diet, exercise and determination.
Family life changed for her and she returned to study and spent several years completing her degree in Psychology and Forensic Criminology and towards the end of her degree, her child came to live with me - to ensure that she had time to do what she needed to do and that he had what he needed for his educational support too. It worked well.
After finishing off some other courses after graduating, she moved to live in the same town as the rest of our small family - her child staying with me as he was in his final year of secondary school. She moved in a few weeks before the lockdown of Covid-19.
On the whole, she had been coping well - even though the stresses of the previous few years had brought on a number of episodes, she seemed to recover fairly well from them. However, Covid-19, as for many other folk, pretty much slammed the door shut.
I became the support carer not only for my own household, but for that of my daughter too and so began my learning curve of how MS affected her life.
I knew that she had been following a particular type of diet to manage her health - gluten/diary/pulse free and very occasional green vegetables and she ate lots of fruit, chicken, turkey and occasionally fish. So I pretty much knew the sort of foods to purchase for her and of course, anything else was easily relayed on as I was in her support bubble. The effects of the year took its toll though.
In November last year, she collapsed and was taken into hospital, treated and returned home. Unfortunately, the hospital had failed to mention that she had an unstaged ulcer at the base of her spine and this was only discovered by default the day after discharge and then the effects of her episode began to manifest themselves. An emergency care team was called in and so it rolled on with daughter making good progress in her recovery, then out of the left field, another episode and back in hospital again, this time for a lot longer, and a rehabilitation centre after and all doing well, then another episode of seizures. Right now, my daughter is sitting in a community hospital, surrounded by elderly patients, waiting…to find out whether she is going back to rehabilitation or home with a Direct Payment Scheme and her own carers. It is all taking too long.
This has been the most stressful time for me, the rest of the family and of course, the most awful stress on my daughter - who has had people, often times strangers, in and out of her life since discharge last November.
I am convinced that this constant intrusion, since that first discharge, has contributed towards her internal stressors and brought on the subsequent, almost cyclical, bout of episodes!
I am also convinced that the constant variations in her diet, despite my saying repeatedly that she is a fruit and veg eater with chicken, turkey and occasional fish, gluten/dairy/pulse free and only occasional other green vegetables has contributed to the further decline of her capacities. When I have stayed at visiting times, foods that she has not eaten for over 15 years were being served up to her and I have had to push for her diet to be recognised in hospital and the rehabilitation centre. She has been diagnosed as unable to self-initiate her care and is not self aware about her health and functions. She eats whatever is in front of her and so they are giving her whatever comes up on the service rack for her. There have been nursing observations that she is being sick or has stomach issues, and they put it down to scoffing the fruit and gluten free snacks that I have taken in for her (so that she may have her favourite foods and a biscuit or piece of cake as everyone else at tea time). I have pointed out, in some very open online meetings about her dietary requirements and how they are not being maintained - it changes for a few days probably soon reverts back. I am seriously concerned whether this substantial change in her diet is contributing to her decline.

The reason for this long post? Well apart from setting the scene for my ignorance, (fast learning is ongoing) I was hoping to find out more about this type of diet that she seems to have followed and hoped that someone might be able to point me in the right direction to read more and also, whether my thoughts on her current decline might be heading in the right direction - ie her preferred diet is being ignored seems to be paralleling her decline.

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Hi, I’m sorry you are both in such a stressful situation and I hope it is resolved soon. I’m a vegetarian, and use oatmilk to limit my dairy intake where possible. This is anecdotal but in the nearly 3 years since I have been diagnosed with RRMS, I have been relapse free with clear MRI’s too. I exercise when i can and don’t smoke or drink alcohol. I also take the DMT, Tecfidera.
I don’t think there is any conclusive evidence that diet helps with the control of MS or can prevent decline, but the general benefits of a healthy diet are well documented. I wish you and your daughter well.

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Hello Katsmum

Welcome to the forum. I hope you find the support and information here that you are seeking.

I do feel for both you and your daughter, MS is a tough disease and a steep learning curve for you.

Personally I’ve never believed in dietary means to manage MS. There are any number of gluten free, dairy free, whole foods, vegetarian, etc diets to which many people swear by. (See the Overcoming MS diet, aka OMS, Best Bet and many others.)

Whilst not believing in following specific diets (particularly gluten free, unless one is actually coeliac), people who follow them seem to do well whilst eating according to their particular diet. So there is a definite probability that following such diets suit some people and that their MS is helped by the diet.

What is just as likely a problem for your daughter is that she’s followed a restrictive diet for years. To suddenly start eating foods containing gluten, refined sugars, and fats will in all likelihood be causing her system real problems. It’s akin to a lifelong vegetarian suddenly having to digest a diet heavy in meat. Their digestive system just wouldn’t be able to cope.

Have her hospitalisations been MS related (ie relapses) or not? It could be that having had no disease modifying drugs (DMDs) she is now beginning a series of severe relapses, thus diet might not have such an impact on her health at present. Or maybe the dietary changes have impacted on her digestive process, but not on her MS as much as seems.

Then again, if her hospitalisations are due to the ulcer on her spine (for which I am truly sorry, one would think MS was bad enough, but further problems just don’t seem fair!), then MS isn’t relevant. Again though, her change of diet still might not account for her ill health. Or maybe it does, simply because it is a massive change of diet.

Regardless of the reason she is in the rehabilitation unit (I’ve been in a rehab unit 3 times myself, we are lucky to have a brilliant specialist neurological unit locally; the food is of course dire irrespective of the quality of the care!), she is suffering due to her diet.

I can easily believe the dietary changes are making her rehab and recovery much harder. Is it possible to speak to the unit? Try to get them to work with you/your daughter so she can revert back to her normal diet. Maybe it’s possible for you to provide some meals for her? This was done in the rehab unit I was in. There was one patient who’s mother made her salads, others whose partners brought them fruit ready prepared. Or that the hospital (or whoever provides the meals) can work on a diet plan to suit your daughter? Clearly they are able to provide for vegetarian diets, diabetics, diets suitable for religious reasons and others. There should be no reason why your daughters diet can’t be catered for.

I do hope you get it sorted out.

Sue

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Thank you Ssssue for your kind welcome and response - it is very interesting and in many respects mirrors the views that I have held for years about a substantially different restrictive diet.

Shortly after I wrote the post yesterday, her son came to talk with me and saw it just as it was passed by admin. He read through it, we talked about the sort of foods that his mum liked to eat and those that she avoided - we wrote them all down.

It was whilst we were writing them down, I had a light bulb moment and some of the stuff that had been going this last week or so with my daughter came together in my head and I joined the dots.

The Consultant Clinical Psychologist at the local Brain Injury Unit, who had been to see her last Wednesday morning, (at the insistence of her MS Nurse so that an assessment to her cognition could be ascertained in the NHS Nursing Assessment), identified her lack of self awareness and her lack of being able to self-initiate any activity for her self and this was probably leading to her eating whatever was in front of her and was what was probably causing her to be nauseous and vomiting up excess food.
He went on to say, that she presents really well, talks cheerfully, apologies for not remembering stuff and used phrases like - “Oh, I did know that, thank you for reminding me” - but was unable to identify what was on her unit behind her head, saying that she did not have whatever was there. He also said that because she presents well, it is likely people do not realise that she has limited cognition capacity.

OMG - those words came back to me yesterday afternoon Ding Ding Ding! Of course, she presents well, so folk are leaving her to mark her own menu food requests and then giving her whatever she sees there - I witnessed and stopped, a gf bread sandwich with ham (she doesn’t eat red meat) and then yesterday, I realised that I had seen her drink a cup of milky coffee!
Another OMG - I, like everyone else, had assumed that she would say no to milky coffee and have it as per her usual black coffee and of course, she wasn’t doing that as she has lost capacity to identify her own needs.

I phoned the hospital immediately, and had a long chat with the Staff Nurse, went shopping took some Oat Milk and Almond Chocolate drink, a few fruit based smoothies, some other GF stuff and re-wrote the Food List that my grandson and I had identified earlier and took that in too.

I know it is a long shot, but if she has been eating and drinking anything that they have been giving to her or what she has chosen off the menu, then they would have assumed that she had made an informed choice as her own decision and she could have been consuming anything these last few months!

I had a long chat with the Ward Sister about the fact that she presents well and we have all accepted whatever she has wanted but we now know that she is not able to make informed choices from the menu. That it is down to us to keep her to her own diet, the one that she has followed for years and that, if need be, I will take in food for her as I did yesterday. Thankfully they have accepted that.

I am so concerned that this inadvertent drinking of cow’s milk may have caused all sorts of reactions and upset her gut too. Both my grandson and I are allergic to cow’s milk protein, I had never given a thought to the fact that she might have been too, and it was something that she had diagnosed as an adult, which is why she was dairy free - she used to virtually live on it as a child!

I have also, this afternoon, talked with her boyfriend about the CBD oil that she was using, then asked the Nursing Team to check with the Drs whether she can have that too - I am willing to try anything to stop this downward slide.

She is not currently on any medication other than a pain relief, beclafan I think it is called. She is due to start a DMT in the near future and I am taking her to see her Neurosurgeon Consultant next Monday. Just hoping for some good outcomes for her.

Thank you for reading all this, it does help me to write it all down too and understand more about her illness. I really appreciate your patience.

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Thank you RetroviusUK for you kind thoughts. I am sorry, I have answered responses out of sequence and if you look below, you will see that I have, as my husband says, written for GB once again! I had a few ding ding ding moments yesterday afternoon and whilst I too am not entirely convinced about dietary influence on MS, I do accept that dietary choices are a great indicator of good health and like you, my daughter had lived what she preached and was really healthy and vitally alive, witty, funny, sharp and willing to have a go at anything, nothing held her back - for several years since her diagnosis, she was a playing member of a Live Action Role Playing Group at Uni - wearing a top of metal chain link in medieval battles - so heavy that I struggle to pick it up in its bag. I really hope that getting her back on her own diet, and getting others to help her keep to it, brings back some ability for her to recovery some memory and mobility again.
Thank you for support in writing, it is really appreciated by me.
Kind regards

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Hello again

Phew, a kind of relief for your lightbulb understanding of what’s going wrong with your daughters diet. Yet also a sobering realisation that her cognition has declined so much.

Some information (in case you were running out of reading material!) for you on cognition: Thinking and memory problems | MS Trust The MS Trust have a huge number of information sheets on varied issues, drugs and symptoms related to MS (some may even relate to ME/CFS and Fibromyalgia too).

Also, there’s what’s been called an ‘MS-Selfie’ by Professor Giovanonni on cognition: Has MS affected your cognition? - by Gavin Giovannoni Professor Giovanonni is a world renowned expert in MS as well as being the most hardworking nicest man imaginable. Both of these sources can be trusted to give you correct information.

I can imagine how you must feel regarding your daughters current condition and particularly severe cognitive function. Sadly so many of us do live with diabolical memories and slowing down of thinking potential. For some that is very extreme. I can’t help but think your daughters cognition is perhaps worsened by her gastrointestinal distress caused by eating foods that either she is actually allergic to, or even just what her stomach and digestion are unused to.

Hopefully working with the neurologist and staff at the rehab centre will improve things.

By the way, the drug your daughter is taking is most likely Baclofen. This is to combat stiffness and spasms rather than being a direct pain reliever (although spasms can also be flipping painful!). Hopefully she will also be put on a good disease modifying drug which will lessen the number and severity of relapses. Given her current digestive problems, might I suggest you tell the neurologist about this. In particular so that s/he avoids prescribing a drug that might cause Kat (I am assuming that’s your daughters name). I’m thinking to avoid Tecfidera in particular as that can cause digestive problems and should be taken with quite stodgy food to prevent this. If the neurologist isn’t aware of the severe gastric issues, she could be prescribed the wrong drug for her needs.

Best of luck. Your daughter is lucky to have you fighting for her. I hope she improves and is able to leave the unit.

Sue