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newly diagnosed course

I hope you’re all well and not battling the heat yet. I don’t know if any of you remember me mentioning the course for newly dx patients. Well tonight was the first of five sessions and it was really helpful. It was basically an introduction to ms, how it progresses and affects us. My Neuro was the speaker. But he asked us what we wanted him to cover too and he incorporated all that info into that he wanted to tell us.

Just like at his consultations he was patient and has the knack for giving the gloomiest news with such tact (without leaving something out or skirting information) in such a way that the light at the end of the tunnel continues to shine really brightly. You couldn’t wish for a better person to have on your team against the illness, and his nurse is just as available, friendly, efficient and yet so reassuringly competent.

I’d definitely recommend that if anyone of you get offered something like this, that you seriously consider attending. I’m actually looking forward to next week, in fact the entire agenda sounds very interesting. Have all of you had similar courses?

I’m tired now, so goodnight. But I’d love to hear your experiences of these. Thanks.

Cath xx

Hi Cath, that sounds fantastic… and I would think just being in a group of people who all struggle with similar problems would be a tonic in itself. I’ve never been on such a course, or heard of one, but sounds like a brilliant idea. What a wonderful neuro you have. Keep us informed about it… and if you learn anything new. Take it easy today… going out in the evening… blimey Cath that’s bordering on a social life!! Pat xx

Wow Pat, you’re right. Thinking about it, it’s the first in a long time since I went out on an evening. That must be the reason I’m shattered, not because I took my meds late. How exciting!!!

They cover some very good topics though like diet, exercise, fatigue, coping physically and mentally and even benefits. It’s all very relevant and they have specialist speakers for every topic. I’m becoming more and more convinced that only nice people get ms as everyone was so pleasant and really lovely.

Take care, hope the predicted heavy rain doesn’t cause you all problems.

Cath xx

Hi Cath, Glad you enjoyed your evening. I went on one when I was newly diagnosed and found it very informative. I have still got all the leaflets and information so I think I will have to refresh my memory, if I can remember where I put them. Do you have a meditation part of the course? I really enjoyed that. My husband is off for the next few days, so we went to B & Q for some paint to freshen up the lounge before we put house on market in August. Had to come home early as I needed loo. He can’t understand why I can’t just hold it in. ( men eh!!!). The rain and wind chill off the North Sea makes it really miserable here. Take care Mags x

Hi Cath

Sounds a great idea, I was never offered anything like that, but years ago there was nothing for ms, it was just a case of going home, being scared and getting on with it. Times really have changed, for the better when it comes to a ms diagnosis, whilst I wouldnt wish it on anyone, it really is much better now than back then.

The neuro told me back in early 80s that a cure was just around the corner, hopefully it wont be too long, but I am not holding my breath!

Just had terrible thunder, lightening and torrential rain here.

Pam x

Mags they’re bringing someone in next week to talk to us about alternative therapies so meditation might be discussed, I hope so.

Cath xx

Pam the Neuro told us last night that nobody has found a cure and nerves that are permanently damaged can’t be repaired so he didn’t sound like he was expecting anything miraculous either.

Cath xx

Cath, nobody has said much to me about diet. I’m trying to be pretty sensible, because of not being able to exercise much, but nothing has been offered as being potentially beneficial. What did he have to say on that front? It does sound like a really good idea, and you have to give him full marks for putting an event like that on, presumably after a day of ward rounds and outpatients.

Glad to hear you enjoyed it Cath, I shall look forward to hearing more about it as the course goes on. Like Pam there was nothing like this when I was diagnosed. Good luck with the rest of the course…hope you don’t find it too much going out in the evening! Nina x

Kev my Neuro said briefly that as long as you maintain a healthy diet with the usual, fresh fruit and veg and a generally good balanced mix of all food groups you should be fine. He said that studies of all these diets where you omit food groups haven’t proved to be of any benefit on the whole. Everyone is individual however and some people feel healthy omitting things.

The main talk about diet though is on week four so I might be able to answer that better then if you’re interested. You’re right, I’m really lucky to have my current Neuro. He specialises in ms and is extremely dedicated. He believes that if you’re comfortable and informed about MS and how it’s affecting you, you’ll cope much better and will take as long as needed with you at your appointments. He also believes in seeing you when you have problems or questions is much more effective than a set six or twelve month period. I didn’t know, but we’re supposed to phone the nurse with any change or problem as even if she handles it, he knows and sees the big picture. You definitely take a thick book when you go for appointments as you wait for ages but nobody minds as he’ll spend time with you too.

Nina I’ve only been to one session and already thought I understood a lot about MS both as a sufferer but also as a nurse. I realised that there’s so much more to it and he’s really made it so much clearer. I think everyone should be offered it. You also meet some really lovely people.

Well I’m not sure if you want updates about what we’re told but if you do I can summarise for you. I don’t want to tell you things you already know and don’t really want me raving about, but if you do want to hear, please let me know.

Enjoy your Bank holiday weekend. Doing anything nice? I’ll probably have a stroll around the car boot sale, one of my many pleasures in life. Take care.

Cath xx

I think updates would be very useful Cath… esp if you learn something that you didn’t know… if you haven’t seen it in any posts there’s a good possibility that others won’t know it also. But please don’t think that you have to do a long informative post after every session… that will be stressful and will ruin your enjoyment of the course. Just tell us if you think there’s something interesting and if you feel like putting it in post. God knows we can all do without added pressure!!! Enjoy bank holiday… I’ve got no plans… will see how it goes… Pat xx

Thanks Pat. I’m awful for writing long posts I know, sorry but I’ve always explained everything. My daughter goes mad at my text messages too. I know what you meant though, will pass on anything new I find interesting.

Take care xx

[quote=“Min”]

Kev my Neuro said briefly that as long as you maintain a healthy diet with the usual, fresh fruit and veg and a generally good balanced mix of all food groups you should be fine. He said that studies of all these diets where you omit food groups haven’t proved to be of any benefit on the whole. [/quote] That tallies with what my neuro said- eat sensibly in other words. He also comforted me by saying that there was nothing I may or may not have done in the past that would have improved my situation, and nothing really apart from the obvious (eat healthily, exercise) that I should or should not do from now on. Thanks Cath.

[quote=“kevadams”] [quote=Min]

Kev my Neuro said briefly that as long as you maintain a healthy diet with the usual, fresh fruit and veg and a generally good balanced mix of all food groups you should be fine. He said that studies of all these diets where you omit food groups haven’t proved to be of any benefit on the whole. [/quote] That tallies with what my neuro said- eat sensibly in other words. He also comforted me by saying that there was nothing I may or may not have done in the past that would have improved my situation, and nothing really apart from the obvious (eat healthily, exercise) that I should or should not do from now on. Thanks Cath.[/quote]

The only other thing he said was to take Vitamin D supplements. It has been proved that more relapses and worsening of symptoms happens in January and February in the UK when we don’t get much vitamin D from the sun. He recommends 1000 iu per day. Some also believe fish oils help maintain brain function.

Cath xx

Vitamin D: check. My GP started me on those quite a while before the neuros settled on the MS dx. My vit D levels were low mainly, I suspect, because since my cancer in 2010 I haven’t been outside nearly enough. I’m on sodium supplement as well- I have low sodium episodes. No-one has yet explained why.