Just diagnosed with MS

[Dededum]

Thats it really, not a huge surprise (but I had just been struggling on so hadn't thought about it). DH in America till Saturday, parents in Scotland, kids at home so staying out of there way.

Feel tired, bit teary, a bit relieved that my inability to walk more than ten minutes isn't me being lazy or not determined enough. Just actually that I need to make some life style decisions. Never been ill really in my life, I used to love walking, used to walk all over London. Sad that won't be able to do that again, but happy that I did loads of adventrous stuff when I was younger.

Just wanted to write it down. Thanks for listening.

[clarkykitten]

Hello choculaits and welcome. And hello again everyone, I haven't been on for a while, my kiddies have both had a bug and my husband has lots of seasonal work, so it has been a bit manic!

Re diet, has anyone heard of Dr Terry Wahls? She had SPMS and then adopted a Paleo type diet and went from being wheelchair bound to being able to ride a bike?! The diet seems quite extreme and difficult for me as I'm not a big meat eater... I am trying to eat healthier so your diet sounds interesting dededum and maybe a bit more doable for me. The thing I struggle with is adapting my diet when trying to deal my DD, who is a v v fussy eater and we have been encouraged to all eat the same foods.

Still waiting to hear back from the MS nurse, have left 2 messages now. Bit pissed off with them, to be honest. I understand that they're busy but their job is to ring people back. I work as a SLT for the NHS - I would get in trouble if I didn't ring patients back.... Anyway, I will definitely be saying something when I see them in Oct. ohh, that ended up being a bit of a rant! Whoops. Hope everyone is enjoying the weekend x

[mayihaveaboxofchoculaits]

Hi clarky, yes this is the person on ted talks!
Yes your right ,the sheer quantities of cruciferous veg is daunting, and I cant believe diet is the magic bullet in itself, but at least its a conversation about self care that needs to be started and kept up.

[Dededum]

Hi Clarkykitten - MS nurse sounds a bit s**t, feel free to rant away.

Today So far I have eaten no added sugar muesli with rice milk, 2 banana, coffee with rice milk, 2 peppermint teas, cranberry juice, orange juice, 2 carrots. For lunch avocado with extra virgin oil & balsamic vinegar, tomatoes, red onion, pitta bread and humous (think the humous was a bit naughty) and vitamin d tablet, fish oil tablets.

I quite like the food to be honest, but it does take quite a bit of organising to make sure you have the fruit, vegs etc.. in stock. It is weird cooking food for my kids that I am not 'allowed' to eat.

Anyway this is only day 3 and I am meant to do this for the rest of my life!! Ask me in ten years how it is going?

If you are interested look at overcomingmultiplesclerosis.org

Also they promote, exercise, meditation, vitamin D as being part of the solution.

[moodyblue]

Hi everyone. Not been around for a while. Been having a relapse and have felt lousy. Been having strange spells of dizziness with loss of co-ordination - feels almost seizure-like how it comes over me in waves. Ms nurse booked me in for an assessment and I've just finished 5 day course of oral steroids which have made me feel even more bleugh.

Funnily enough I've been looking into the diet thing too and just got the George Jelinek book from the library. Have been eating a huge packet of crisps while reading it though which I'm sure isn't the idea.

Hope everyone is doing ok - clarkykitten I can totally relate to your problems with ms nurses. Is it you who is at qmc?

[moodyblue]

Sorry clarky just read back and it's Almostamrs at qmc

[Dededum]

Hi Moody, just got the book today. What do you think?

[moodyblue]

Not read too much yet. Did like the sentiment 'multiple sclerosis is two words not a sentence' though. Will let you know when I've read more. Not doing well with the diet though. Don't know if it's the after effects of the steroids but I can't stop eating and all things I know I shouldn't!

[Dededum]

Fed already cooking things for the kids that I don't eat, sausages for tea. I want to fill my cupboards with lovely gluten treats! This is only really going to work if I inflict my regime on the kids!

Booked a vit D test for Monday.

[clarkykitten]

Thanks for the website dededum I'll have a good look. I have started taking a tablespoon of flaxseed everyday, which is meant to help as it is rich in omega 3, have also looked into supplements but they are quite expensive :( your daily diet looked nice though, something I can definitely do when I pull my finger out and get organised!

Hi Moody, yes I am at QMC too. Due to go on the 25th for my yearly check up. I really wanted to speak to the MS nurse before I went so that I can discuss the fact that I am less mobile than last year. I felt a bit rushed at my last appointment and the consultant made a comment that rather than my MS getting worse, it is just transient 'symptoms' brought on by heat, exercise etc - well, when the 'symptoms' are there all the time, it's not transient anymore, is it?

Sorry to hear that you have been poorly :( Hope that you are feeling a bit better and that you have had your assessment?

[clemetteattlee]

Can I join in too. Diagnosed March 2012 (first relapse April 2011, second January 2012), now injecting Copaxone daily. Two more relapses since diagnosis but feeling well. I am an ex-teacher, now a final year medical student and anxious about what the future holds but feel a lot better emotionally than I have since diagnosis. And I am at QMC too!

[clarkykitten]

Hi clemetteattlee and welcome. Wow, you have a lot on your plate, but glad that you sound ok. Do you find that being in the medical profession helps? I remember doing my neurology lectures (I'm a SLT) and hating the fact that I already knew all about MS - our lecturer (who didn't know I had it) was painting the 'worst case scenario' as well, which didn't help. That was a long time ago now though!

[Dededum]

Hi clementattlee - welcome to our unfortunate gang. Wow, final year medical student - that must be tough.

I am feeling good, still sticking to diet though sometimes I forget. Went over to see a friend and had a cup of tea, by the time I remembered no dairy it was too late.

[Dededum]

Oh yes did Vit D test, the doctor said it was sufficient, but after research I have ignored them. Boosted it with mega dose and now taking 10000 it'd every day. Going to retest in three months.

I always get very down in the winter, will be interesting if any different this year.

[clarkykitten]

That would be interesting, wouldn't it dededum? I am the same, feel generally rubbish when it starts to get colder and there isn't as much sun. I am rubbish with my diet at the mo, have had two funerals this week for family members so hoping to get started after I see the consultant on Friday. Where do you get your supplements from? I am a bit skint and they are always so expensive :(

[clemetteattlee]

Clarky I have blogged about that exact thing. Nothing like an MS lecture to scare the life out of you, and they talk about MS all the time here! blog post if you are interested

Generally going through a positive phase. Today I realised that my injections no longer hurt.

I bought my mega-dose vitD from ebay. It is "healthy origins" brand.

[Dededum]

Clement - love your blog, really well written, going to subscribe.

You can buy spot Vit D test off the internet for about £25, or hassle your doctor for a test. He will tell you that anything around 60/70 is adequate, ignore, you should be aiming for 150 ish. Look at //www.overcomingmultiplesclerosis.org, they have a whole forum section just on Vit D. I bought mine off the internet as well, they are expensive if you take regularly. You have to take Vit D3 as this is closest to sunshine.

Discovered that Pret do a soya milk latte which tastes really nice and a scary superfood salad.

I am so horrendously positive at the moment despite the dark, cold, nights coming in....

[clemetteattlee]

Thank you. A friend encouraged me to write it but it feels a bit exposing to do so. Also, it was supposed to be a positive look at MS but the earlier posts made me cry to write!

[moodyblue]

Hi everyone. Clemette I loved your blog too (saw it tweeted by ms soc or ms trust).

I'm in a good place at the min. Over the relapse (those steroids are good!). Was back at work for a week then been off this week for half term. Have managed to get out for a couple of walks this week and did some yoga today. Downloaded a good yoga app to my iPad.

Back to work tomorrow so fingers crossed I stay in good form!

Hope everyone is well.

[clemetteattlee]

Ooh, intrigued to hear about yoga app...

[moodyblue]

It's called All-In Yoga. There's 300 poses and 40+ workouts that you can select by level, duration or purpose. Only just got it so not sure how good it is yet but it was on offer for £2.49. There are pics and a VoiceOver that talks you through he moves. You can log your progress in the calendar and look at the muscle groups worked by each pose.

We'll see how long till the novelty wears off!

[LadyMaryLikesCake]

Hi

Hope you're all OK.

[Dededum]

Wow, thanks fr asking.

Made it through Christmas and all the rain.... Much more positive than usual, probably the Vit D. Also more chilled out which meant the whole family was more positive!

I have been doing more walking (very good news) and am now volunteering 3 days a week. Still doing the yoga.

I am basically a vegan now, who eats fish. Not all difficult, think the thing that really was not good for me was the dairy. Think probably gluten intolerant, mostly just whole meal pittas but if I do have pasta or bread I feel really lacking in energy.

I do feel better, my energy levels are better and my walking distance and speed are increasing. I do feel I am in a bit of recovery mode and though not meant to say believe that I can recover if I keep on the path that I have started!

Am now going to read back this thread.

LMCQ - how are you?

[Dededum]

Just read back through the thread, fascinating...

Hope everyone is doing well.

[LadyMaryLikesCake]

I'm not bad, thanks. I really overdid work in December but I've been resting for the past few weeks and I feel fab. I had no idea there was a connection with MS and vitamin D so I'm really thankful for your posts. I was told I was deficient in October by the GP but he didn't say anything else. I bought some pills from Boots but hadn't been taking them properly as I didn't realise. I am doing now though.

Carbs are hard for the body to break down and can cause lethargy. They are best eaten at night. I've really cut down though and I do feel better (could have been the work though). I hope the new food helps you. I think it's really important to be positive. My mum has different health problems and all she does is worry and talk about them, she just gets one after the other and I do think her outlook isn't helping her (makes me feel mean about thinking this way though).

Things sound so much better for you, onwards and upwards, hey!

[Dededum]

Hi LMQ - what you need is Vit D3 and quite high dosages, I initially took a megadose of 100,000 iu and now take 10,000 iu a day. They are pretty cheap and you can get high dosages off the internet.

I have become a little proselytising about diet. I did slip up last night, we went out to a burger place and after eating my veggie burger did have some of my son's left over burger. I felt really sluggish afterwards so for breakfast had a wheatgrass and spirulana smoothie. Not quite yum, yum but edible!