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.

[LadyMaryLikesCake]

Wow, that's a huge dose. These ones are 1000iu and one a day. The ones the GP has prescribed are 800iu, so even less (GP was crap though, I switched in October doesn't look as if they considered the MS). I have an appointment at the hospital for a check up in May, I'd rather not leave it until then so I'll have a think.

I think the thing with diet is that your body isn't use to even little amounts once you've cut something out, so it kind of gets stunned (IYSWIM). I took ds to McCrap's on the way home from school yesterday and have slept in this morning. I'm still quite tired now. I was full of beans yesterday (I'm not doing too well at the low carb diet)

[Dededum]

Hi LMCQ - oops meant to say 1000iu a day.

[LadyMaryLikesCake]

Thank you! I have hundreds (buy 2 get one free), they will keep me going (if I remember to take them).

I hope you're having a fab day, it's pissing it down here.

[weird2014]

Sorry to butt in on here but if anyone is still around....

I have recently been diagnosed, bit of a shock but lots of things add up.

I have a question about drug therapy, any advice welcome. Have a an appointment soon to discuss drug therapy, nurse has directed me to some info but it feels a bit overwhelming. Having ms seems to have impacted upon my mood, prior to diagnosis I thought I had had depression but Nurse has explained impact ms can have in this way. My key worry is that drug therapy will make me feel depressed and anxious again and I just wondered if others would be happy to share their experience.

Thank you.

[Shenanagins]

Sorry to hear about your diagnosis, it is a huge thing to come to terms with and 5 years later i still haven't managed it.

There is a little of information on the internet but be careful as some of it can be quite depressing.

i can't help you with the drug therapy but I'm sure the nurse will be able to help - i always write down my questions in advance so that i don't miss anything.

[weird2014]

Thank you. The internet has been really helpful. Not least in demonstrating that this is such a variable and unpredictable disease, which, as a natural planner, I find one of the most difficult things. Thank you for taking the time to respond I really appreciate it,

[Shenanagins]

It is a variable and unpredictable disease and the worst is that the medical experts can not tell you how it will progress with you or what to expect.

So far i am one of the lucky ones in that over the 5 years since diagnosis i have never needed a day off work sick, i have had 2 children and continued my life pretty much as normal, even going out for a run this morning.

However, it is always there at the back of my mind and I have no idea how much borrowed time I'm on and how the disease will progress. The experts say the longer i continue like this the better but they always caveat it by also saying that they can't be certain of this.

I guess what I'm saying is that it is possible for your life to continue a diagnosis isn't a death knell, there is always people out there to talk to.

[Moid1]

Hi I started the thread last July , as Dededum.

I have no experience of drugs as I have PPMS, but there are lots of positive stories of people who have looked at there diet, supplements, yoga, meditation, stress levels etc.. The more you accept and take control of your illness the more in charge you feel.

The two main programmes for MS are the paelo / Wahl's diet and Overcoming Multiple Sclerosis diet. I try and follow the OMS diet, there is lots of good information / resources on the net. I find a lot of the other stuff a bit depressing and try and stay away from it!

[weird2014]

Thank you moid. This thread has been very helpful. I have read so much over the past few weeks and hearing other people's experiences has been so helpful although I have also learnt how just absaloutely random this thing is. I hope you are doing ok.

The biggest thing for me is managing stress and to sort that first. My job is difficult even without this so I've involved occupational health but could really do with minimising the stress. Have also started the Vit D and trying to consider what I eat more.

I start on copaxone soon so we shall see how it goes...

[Moid1]

Good luck.

I am a member of a Facebook group, it's great to have other people you can talk to about taboo issues such as bladder issues etc.. I tried another a group but that was a bit depressing, this one is very positive.

[weird2014]

That sounds good but a bit wary of FB as my I haven't fully told my kids yet, am drip feeding what I think they can deal with.

[Moid1]

I got diagnosed last year but only told my kids last week! They were pretty uninterested ( 2 preteen boys), doesn't really affect them much. It explains why I can't walk to far and used to fall over a lot but everything else not interested. I had hummed and hahed about telling them for ages.

Mine is a closed Facebook group, not totally sure I trust it but in theory no one outside the group can see your posts or those you recieve.

[weird2014]

That sounds useful. I don't really know anyone in real life with MS or at least not that I know of. My kids know bits as they ask but one of them took the the illness of another close family member very badly so I am wary. Best way no doubt if they are more disinterested, if they see you have had it for a while and it hasn't massively affected them they probably don't see it as such a biggie.
I bet its been a very momentous year for you. I hope you have been able to work through the turmoil diagnosis throws at you.


One year
Thank you so much shenanigans and moid for responding. It really helps to know there are others out there getting on with their lives.

[smokeandfluff]

Weird, hope you're doing ok. My dh was diagnosed with ms three years ago and started on copaxone. Apart from some transient symptoms (numbness in one arm) last year, he has been in very good health and relapse free thankfully.

[weird2014]

Smoke thank you,hearing other's stories is helping me massively.

I've started on the Copaxone, apart from the stinging which I can quite easily distract myself from, I am managing well with it.

I am struggling with the emotional effects of diagnosis and uncertainty and the randomness of symptoms. I know stress is massively bad for me and need to work out ways to minimise it, but easier said than done, but I will get there.

Does anyone have experience of support groups and whether they helped? My GP has reccomended I seek one out but not sure I am ready for that.

I ricochet around good days and bad days, fear, uncertainty positivity and a recognition it could be so much worse.

[LadySybilLikesCake]

Hi (was LadyMary)

I'm working at the moment but I'll come back later (posting so this goes into 'threads I'm on').

[weird2014]

Thank you. Look forward to hearing from you.

[LadySybilLikesCake]

3 hour break!

I know it's tempting to talk to others with the same condition, but please do remember that everyone is different and MS affects everyone differently (they can also be depressing). I was diagnosed with relapsing/remissive 4 and a half years ago. I've had a few relapses, 2 were nasty, but there's been no lasting problems (for which I'm very, very grateful for). Even the burning sensation in my legs has gone, it did take over 4 years to go though. It's scary when you're diagnosed as you don't know what the future holds, just take one day at a time. Groups can offer practical advice though, like giving you ideas on how to deal with pain or bladder issues, but just remember that your MS isn't going to be the same, you're on a different journey.

I don't take drugs except for Vitamin D, zinc, magnesium and calcium. I did get rid of the major sources of stress (mainly my job. I now work from home in hours that fit around the school run which are also 3 hour shifts so I can rest if I need to), and I took a good look at my diet. I ditched the ready meals (I used to work in the NHS with no time to cook so I'd opted for the quick and easy), I now eat lots of organic fruit, veg, meat and fish.

I think stress does make the symptoms worse and it does make the relapses more. I think your body can only cope with so much before it needs you to stop. If you don't, it makes you stop. I also think focusing on having MS will make it worse as you'll be edgy and thinking about every little thing your body does which is out of the normal. If you have a headache, or a trapped nerve you start to think 'is this another relapse', and the constant worry doesn't help. I found that living in ignorance helps here (seriously). If I have a headache I don't assume it's due to the MS. I'll take some ibuprofen and see how it goes. If the headache turns into virtigo, vomiting and pain, then I'll call the MS nurse and get seen. I feel as though I've drown my head in a vat of vodka when I'm relapsing so I make sure I get the steroids as soon as I can. If I don't feel very pissed I know I'm OK. It may sound nuts but it works for me. I enjoy every day and, although I'm aware that I'll get ill again, I don't worry about it. If I'm sick again tomorrow then I'll deal with it then, but life's for living.

[weird2014]

Thanks Ladysybil that's great advice. I think this is all so new to me and was such a shock that I am over focusing on things. I need to sort out the stress issues as a priority and work out the rest as it comes along.

PS will you become Lady Edith at some point and how does she feel about cake? [Smile]

[weird2014]

Smiley face fail...

[LadySybilLikesCake]

I was LadyMary after Sybil's sad and abrupt demise but I prefer Sybil

Take some time, it's a lot to deal with. It's easy to focus on things a bit too much which adds to stress. I knew work was the main bit of stress in my life so that had to go. Some things are a lot harder to cut out though. Maybe look for a different way to deal with your stress? That may help. I used to let it all build up, I'm far more proactive now. It's important to have things to look forward to, days away or something just for you. You're still a person and you can still have a life

[LadySybilLikesCake]