What I’d do if I got diagnosed with MS

to-do-list DOING NOTHING IS NOT AN OPTION!! MS can have a very serious impact on your future quality of life. All measures you can take to stay well, have the most impact when they are done early on, and stuck to consistently. Nobody knows what causes MS. As far as the disease process goes, It’s widely believed that the early inflammation causes damage, which causes later degeneration, but we now know that degeneration is also a factor right from the start. However, there is a lot you can do to combat both inflammation and degeneration, both with medical treatment and your lifestyle & nutrition. Having worked as an MS specialist nurse for about 13 years now, here’s what I’d do if I got a diagnosis of MS:

1) ADRESS INFLAMMATION & DEGENERATION WITH DIET &LIFESTYLE. Get George Jelinek’s book ,’Overcoming MS’ and follow all the dietary and lifestyle recommendations to the letter. I consider this to be a rock solid foundation for good health, whether you have MS or not, and essential for people with MS. It’s also so great to keep hearing individuals stories of improvement, even with long-standing and progressive MS, following this approach, and both Jelinek’s, and more and more research on diet and disease backs up this evidence based approach. See www.overcomingms.org

2) Some – not all – but some, people with otherwise unexplained medical conditions, have an underlying food intolerance, and you can be completely unaware of the problem. If you do have an intolerance, for example, to gluten, then every time you eat that food, you set up a chain of inflammation in the body, which can certainly exacerbate any auto immune condition.  For that reason, I, personally, would also want to identify food intolerances. Finger prick blood tests are available online from companies like York labs and Lorisian. However, there’s a lot of controversy about them, and they have been found sometimes to be unreliable, with a tendency to just show up with whatever you’ve eaten recently. A more reliable way is to spend some weeks doing s ‘exclusion diet’, to see if you can find any cuplprits. Here’s one example: https://avivaromm.com/elimination-diet/ . We know that MS is a conditions with ups and downs anyway, and an exclusion diet is an effort, so both approaches have their pros and cons, but in my experience, when people who have a food intolerance identify and avoid that food, they get a lot better all round, so its worth doing.

If you do identify food intolerance, you need to also learn about gut health, and start building yours up by using a plant based diet and things like probiotics, more on that another time, then, hopefully, your exclusions don’t have to be forever.

3) Find out about your options re drugs. I am not going to be talking about diseases modifying treatment (‘DMT’) choices here, only broad concepts.

MS drugs aim to stop or reduce  inflammation, manifested as relapses, in the hope that this will prevent the degeneration. See the infographic in my Alemtuzimab about the relationship between safety and efficiency of the various treatments available.

An important point to consider is that some of these more effective drugs are ‘second line’ treatments, which means they are only available to you on the NHS if you have already tried the standard drugs. There are also sometimes drug trials recruiting, where you can access a drug as part of an experimental trial. (see other posts) There is a link on the MS Society website to find out what trials are ongoing and how to get involved in a trial.

MS drug treatment is a fast changing topic and you need to have a serious discussion  with your MS Nurse and/or neurologist to find out what you are eligible for, and then read round the subject and discuss to make an informed choice.

Make sure the information you use to make your decision is as objective as possible, and not coming directly from the companies making the drug. www.msdecisions.org is a decision making tool that’s been put together by the MS Trust, the MS Society, the UK MS Specialist Nurses Association and the Department of Health, so its’ as objective as you are likely to find.

Last important point: The earlier in the disease process that a drug is used, the more effective it is likely to be.

4) Consider a clear out. Environmental factors combining with genetic susceptibility is what is thought to trigger MS , and as we are still unsure exactly what those environmental factors are,  there is still a lot of interest and research going on into the role of viruses etc in MS. Even if this turns out to have nothing to do with the cause of MS, any inflammatory condition will be worsened by an overload of any organisms that should not be there, whether they are yeasts, bacteria, virus, or parasites. People who are concerned that they may have an overgrowth of yeast, wrong gut bacteria, etc may want have a ‘clear out’ by doing a  3 month ‘detox’ with a strong natural detox agent. I like something called SOS-Advance, which is a colloidal suspension of strong anti bacterial, anti viral, anti parasitic plant oils like oregano, neem etc, but there are plenty of other herbal ‘de-tox’ products. Be aware, before starting any detox product, that it’s possible to feel really grotty for up to a week at first, if you have a ‘die-off’ reaction. If this happens, drink more water, rest, make your diet light and fresh, treat any constipation, and shower/bathe frequently.

5) Eat Really good Food – it’s not all about avoiding stuff-  food has so much power to affect the cells of our bodies for brain and nervous system health, so read up on a wholesome plant based diet, and ‘eat the rainbow’, especially dark green leafy veg.

6) Becoming more resilient to stress. Super important. We know that unmanaged stress causes and inflammatory cascade in the body, and there’s enough research to identify it, along with infection, as a trigger for MS relapses. There’s load of research now on the power of meditation, mindfulness, and relaxation. Personally, and especially if you struggle to fit meditation or deep relaxation into your day, I like the HeartMath technique, where you learn to synchronise your heart rate variability, and get feedback as to how you’re doing. In my clinics, I use the desktop teaching program, and send people away with the simple technique to do regularly, but you can now purchase an app version, available from itunes: https://store.heartmath.com/innerbalance

7)Read up on intermittent fasting, even if it’s just to use if and when you’re aware that you have inflammation or relapse going on.

So, TO SUMMARISE, and adding the Jelinek/Overcomingms recommendations:

AVOID:

  • saturated fat ( meat & dairy, coconut & palm oil)
  • other fats in processed food
  • unmanaged stress
  • physical inacitivty (as much as possible)
  • foods which you test intolerant to
  • smoking
  • eating too many calories for your needs

TAKE:

  • a plant-based, whole food diet
  • eating a ‘rainbow’ with special focus on dark green!
  • high dose vitamin D3, keeping blood levels around 150nmol/litre
  • 20g omega 3 – 2 dessert spoons of cold pressed flax seed/linseed oil fulfils this
  • probiotics
  • Any appropriate MS treatment drug
  • meditation/deep relaxation 30 mins daily to improve resilience to stress, or regular Heartmath technique.
  • as vigorous as possible exercise 30 mins, at least 3-4 x a week, outside if poss
  • the sun – as close to all over as poss, 10-15 minutes when possible
  • Lipoic acid 1,200mg – see this post

and take courage – many people with MS go on to live healthy lives well into old age. I would encourage you to do these actions to help you to be one of these. 🙂

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