Hi everyone. Please can anyone share how they deal with intermittent sudden intense pain. I guess I am glad that I don’t have constant pain, but I am now walking with a stick because when I get sudden pain, my leg gives way and I risk falling. I was diagnosed with RRMS early this year and am starting Mavenclad next month. I’m 64 and last year broke my ankle really badly and have pins and plates. I thought my pain and weakness was related to that, but it was actually back to normal in the spring/summer so I’m afraid it is actually a new MS symptom. My physio has requested an x-ray to check the ankle but also said it could be MS related.
Any help/advice/personal experience would be greatly appreciated.
I’ve no experience of that particularly, but it seems amazing to me how many things that have happened, now appear to be MS related
Years ago I had trigeminal neuralgia ( agonising pain shooting down into my jaw ) which could have been MS related but it passed after few weeks (GP gave me strong painkillers).
Can I ask what are your MS symptoms? In my case my right leg struggles after 10-15 minutes of use but I’ve never had any problems with sudden intense pain.
P.S my MS nurse says to me ‘don’t assume any new symptoms/ problems are due to MS and get them checked out by your GP
MS was diagnosed after having double vision October ‘23. I still have that sometimes, but also have 24-hr loud, high-pitched tinnitus, also since last year. In the past few years I’ve had episodes of unexplained tripping, and also some toilet emergencies, which I ignored, because that’s what I do (
), but that my MS Team have said are probably MS related.
Thanks for responding. As I said, I am getting an x-ray on my ankle to check that, and my physio has nagged me to do my balance exercises!
Hi delibero.jc,
I’m sorry to read about your pain, I imagine that it’s very difficult to cope with. I strongly recommend that stop consuming cow’s milk. I believe that it provokes your immune system and is probably causing your intermittent pain.
I suffer from PPMS and previously other immune problems. I found partial remedy through diet. The essential thing is to stop consuming cow’s milk in any form; cheese, butter, cream, etc.
Since there is no medical cure or even treatment for this condition, I looked further afield and began to research diet as a cause and treatment. The first thing that I read was that it is unnatural for humans to consume cow’s milk. Consequently, it provokes the immune system. Since MS is an auto immune condition, I stopped consuming milk.
I felt better in all respects within 72 hours: my MS calmed down, my arthritis went and my hay fever also stopped and has not returned for 18 years. I had three young children who all suffered from eczema and that also cleared up once I stopped them having milk.
Perceived medical wisdom seems to be that MS is caused by lack of vitamin D, due to low levels of sunshine. There does not seem to be any medical analysis in this theory, it appears to be statistical supposition because MS is most prevalent in Canada, Scotland and Scandinavia where sunlight levels are lower. However, another interesting statistic is that milk consumption is higher in these areas, probably because arable farming is more difficult in a shorter glowing season, whereas cows can be be farmed in barns.
This seems pertinent for me personally because I was born in Jersey and spent my early life on the beach receiving frequent exposure to the sun. Furthermore, for the few years preceding my diagnosis, I was based in Cyprus and Iraq. However, my mum put milk in all our food because she grew up on a farm in Yorkshire and protein was expensive. Moreover, I played a lot of rugby in my teens and twenties at my father’s behest and he used to insist on me consuming a ‘special energy drink’ that he’d concocted from milk and raw eggs.
I hope my perspective is useful and that you might be able to use my ideas. I could elaborate if it were helpful. To put this in perspective, I used to be an army officer, a ski instructor and a very happy family man but now I live alone because my wife left, I was medically discharged in 2016, can’t walk and have watched my children growing up with another man in a house that I pay for, all because I drank too much milk.
Kind regards,
Jonny Cox
Hi Johnny. If not drinking milk works for you that’s good. I stopped some 17- years ago and now drink Oat, Rice, or Almond milk. Over the years however my MS has got worse and from being able to walk for hours I’m now restricted to 10-15 mins and have developed a few other symptoms as well.
I don’t think it’s true to say that Medical Opinion is that MS is caused by lack of Vitamin D. No one knows for sure what causes MS although the consensus is certainly that it’s some combination of genetics ( recognising that there is no one gene or few genes that cause it) and environmental factors. There is a lot of research looking at infection with Epstein Barr virus as one possible ‘environmental factor’. The virus is very common but, as I understand it, the thinking is that in those with genetic susceptibility the infection triggers MS.
I guess it’s also quite possible that if your genetic make up is such that your Immune System can be easily triggered into attacking your central nervous system then perhaps everyone has their own trigger or triggers- some thing or things that prompt your immune system into erratic activity.
On genetics, there was some work that indicated that the MS susceptibility genes came from nomadic herders in what is now Ukraine /Russia .
It’s true that MS is more common in northern latitudes but it occurs throughout the world and e.g, Iran does a lot of research on the disease .
I stopped drinking milk after reading the book and website of Overcoming MS. Written and curated by an Australian Professor of Medicine who has MS himself , it suggests : diet, exercise, mindfulness/meditation, sunlight/vitamin D plus your disease modifying treatment as ways of dealing / living with MS. The diet bit is about cutting down intake of saturated fats and increasing unsaturated fats . The suggestions are not presented as a cure but as a way of supporting your body in dealing with MS. It is important to continue with the Disease Modifying Treatment which in my case is Avonex.
Really sorry to hear about your personal situation/ circumstances ( been through two divorces myself but thankfully no children were involved and I was able to buy my wife’s share of the house).
Hi Hank_Dogs,
Thank you for such a detailed and useful reply. My MS has also got worse and I am largely unable to walk. However, my arms, hands, vision and other capabilities have been stable since I stopped having milk; it is The Devil’s juice and not meant for humans.
I also read about the herders from Eastern Europe bringing genetic susceptibility into the West but I was not convinced by it. As you say, MS is present elsewhere. The detail of that theory which leapt out at me was that those nomads were cattle herders, presumably bringing milk into the environment.
I have also read about Epstein Barr which is, as you say, common but I strongly believe that the immune system is provoked, or to use your terminology, triggered, by cow’s milk.
I’m simply suggesting that one species of mammal should not consume the milk of a different species; it’s unnatural.
Would be interesting to see rates of MS in lactose intolerant people and races.
Thanks for responding. That’s very interesting, but there seems to be so much conflicting “research” that it’s difficult to know what to believe.
I’m sorry to hear about your personal situation and wish you all the best.
I was lactose intolerant for many years, and just before my diagnosis I found I could no longer tolerate lactose free as it made me tachycardic along with several other foods and medications. Which has been a nightmare as a lot of medications now bulk out with lactose as it’s cheaper. So have to be very vigilant on ingredients labels as it’s hideous when you can hear and feel your hear race. But I have to say since starting kesimpta ( I’ve had 3 of the loading doses) there has been an improvement of my reflux 
it lasts. I feel for those in the same boat, as lactose is in so much nowadays.n
Thanks animali. My sympathies to you .
Your reply has set me wondering how many people with MS have allergies/ sensitivities to some thing or another. I know that allergies etc are widespread in the population but in my case it’s insect bites and beer. I used to be a beer drinker , especially ‘real’ ales until a long time ago I suddenly started getting a runny nose / hay fever type reaction to just one sip. Insect bites always result in a localised and very itchy red swelling that can last for days. A real nuisance living as I do in an area with the dreaded Scottish midge .
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Oh I’m sorry to hear that, and any allergy is hard to deal with. I feel your pain, have used my pain to gain strength to fight for the right treatment before my diagnosis it was a battle for nearly a year with so many food allergies/ intolerance increased lost over 4 stone then I woke with a pain in my head, numb lips and vertigo went to hospital and they did scans diagnosed MS. Told me it was mild they wouldn’t treat it. My 2nd battle I told them I wanted to be referred to another hospital after I had a further 3 relapses in the space of 7 months! I’ve now been on kesimpta for coming up for a month and it’s slowly starting to help .
This forum has helped me, and the people who post on here which I am truly grateful for. Thank you
Maria
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Hello @delibero.jc
I have RRMS too, today I’m feeling the intense lower back and hip pain, I think it’s another relapse/flare-up coming on. 
After 24 years I’m pretty sure of it as it usually flattens me like a pancake 
, but I think it’s a light one so I’ll just try to ride it out with painkillers and physiotherapy exercises 
, I’ll also drop neurology an email to let them know. 
I’m not taking any DMD at the moment, after many years of various DMTs, they haven’t really had much effect on me other than the unwanted side ones. 
Best,
JP