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Hello all,

I thought the time had come to introduce myself to everyone. I've been reading through the forum for the last few weeks, but haven't really contributed much, so I thought I'd take the opportunity to say hi.
I'm a research scientist living in Ireland. I was officially diagnosed with MS two weeks ago but knew the diagnosis was likely for about a month before that. While obviously this was not the news I wanted, I feel lucky to have been diagnosed very early on and to have found OMS so I can actively do something to help myself. I've thrown myself into the OMS programme, although I'm finding the mindfulness/meditation difficult - I keep falling asleep. However, I've recently discovered we have a quiet room in work and also lunchtime guided meditation once a week, so I thought I'd see if it's easier earlier in the day when I'm less tired :-) I should also mention that my vitamin d levels were 35 nmol/L, so I have taken a 500,000 iu megadose and am now taking 10,000 iu per day.

My first question is around the "in moderation" foods. I have been eating small amounts of smoked salmon for lunch most days (sat fat ~2.6g/100g - I'd get through a 200g packet in a week); about 1 avocado per week, and a small handful of nuts with breakfast. Is this a reasonable healthy amount? I've found that my skin is very dry at the moment which I think might be due to lower fat intake (although I'm also eating about 2-3 tbsp of linseed oil every day and using a small amount of EVOO when baking). Any thoughts?

Secondly, I need to decide whether or not to start on DMD's and I'm hoping people here might have some pearls of wisdom. I know this is a choice only I can make, but I'm feeling fairly lost about which way to go, and what consequences either decision could have. My neurologist says that if I choose to take DMD's, he would recommend Tecfidera, however I currently only have one lesion (on my c-spine) and minimal symptoms (lhermitte's, pins and needles after exercise and sometimes slight dizziness when very tired) and he says I need to weigh up the potential benefits against the possibility of long term side effects of being on drugs for many years (I'm 36). So, as I see it, my choice is between starting DMD's now or holding off and hoping I can stabilise myself using the OMS programme (which needless to say, my neurologist doesn't approve of, although he's more open to the idea of vitamin d). I'm wondering if I should take Tecfidera for the first couple of years and then hope to come off them again if I'm stable. Does this happen? The extra security of the DMD's might be hard to give up? I'm also worried that the side effects might be worse than anything that I have experienced due to MS - both options seem like a gamble. I'm sure many others must have had this debate - so any info/thoughts would be great.

Finally a big thank you to all. Reading through this site and forum has been a massive help, both for information and for finding hope when I was doing fairly terrified :-)

Helen

Ps. Does anyone have a recipe for OMS-friendly chocolate (cacao) icecream - all the recipes I have found contain coconut milk :-)
Hi Helen and welcome.
It sounds like you are doing a great job of taking control of your health - well done.

Easiest question first; I make two ingredient chocolate icecream from frozen bananas and cacao powder. I use ripe to over ripe bananas I slice before freezing. When I pull them out I add a couple of heaped dessert spoons cacao per banana (or thereabouts since I never measure and adjust to taste) then I mix with stick blender and scoff. Variations abound from this base; add frozen berries or nuts, leave out cacao and add dates and pecans or walnuts - you get the idea

As to DMD I am in the take one camp because sometimes this sneaky disease does irreversible damage out of the blue which has major impact on your functioning.
In my opinion the short term use until OMS has time for full effect is very reasonable. Loads of people come off drugs uneventfully.
From memory Tec is an interesting drug which seems to be punching above its weight as more experience is gained by which I mean longer term benefits are greater in real life than initial trial results suggested . It has one of the better side effect profiles too with a few strategies you will find discussed in the drug therapies page.

Not saying it is right, but my 'in moderation' is close to yours; an avocado a week, 100-200g smoked salmon a week +/- other fish, handful of nuts as snack most days, flaxseed on toast, veggies or salads or in smoothies. I too suffer with dry skin and slather oatmeal based products on at least daily.

So not sure I have helped with anything more than an icecream recipe but importance is not underestimated!
By the way, avocado, honey, dash of vanilla paste & cocoa powder = divine choc mousse
Hi Helen

I'll apologise in advance for my short reply ( I am at work) but just to address your dry skin and ice-cream questions. Are you drinking enough fluids? I find this always sorts out my skin particularly my chapped lips. There's a brand of ice-cream I eat that can be found in health food shops and big supermarkets (in Ireland too) called Booja-Booja. They make a variety of flavours most of which are OMS compliant and are really good. It's not cheap but eaten infrequently and mainly for special occasions I'm happy to fork out for it.

Hope you get some answers for your other questions.

:)
Thanks for the suggestions/info. It's really helpful to hear what other people have decided re DMDs.
And now that i think about it, i might not drinking enough - I've noticed that I'm thirstier since starting OMS.
In the meantime, I shall start stock piling bananas and will check out the supermarkets. I didn't know there were any commercially available options for icecream :-D
Hi Helen and welcome.

I'm a relative newbie as I'm just over six months into my OMS journey. I was diagnosed September last year but had my first relapse in 2001 with minimal symptoms. Second relapse just before diagnosis.

I have posted regarding Tecfidera - my story and updates are on the drug therapies board under the heading 'My experience on starting Tecfidera'. I'm afraid I can't see how to copy and paste the link as I'm on my mobile just now but it's about four or five from the top as it's still live.

I all for OMS plus DMDs - at least for the short to medium term - doing whatever it takes.

Also, my satfat foods as similar to yours except I might have a bit more oily fish.

Take care,

TuffMum x :)
Booja booja watch out for coconut it often creeps in. DMD include reading up if the ones looking at have a rebound profile you'll want to consider that in your deliberations. You are doing great you have grasped the driving seat.
I must recheck the labels (always worth doing)! Unless I'm incorrect the booja-booja ice-creams are coconut free apart from the coconut flavoured one. I can't speak for the rest of their products as I think they're probably not OMS compliant anyway.
I had a quick look online - books booja icecream is coconut free (and look absolutely yummy). Unfortunately they all contain cashew nuts which my daughter is allergic to, so they're not for us. I'm going to borrow an icecream maker and see what i can make at home

Thanks Tuffmum - I'll have a look at your tecfidera experiences. :-)
Except the coconut flavoured one of course :-)
Ripe spotty banana and 1 tablespoon cocoa powder (read label) use stick blender and blend, put in something freezer proof and freeze. Take out let sit a bit then eat enjoy no effort chocolate ice cream.
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