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.

Thanks clarkykitten
I notice from your previous post that you struggle from MS fatigue - just wanted to let you know you're not alone there, fatigue is probably my biggest bind as it affects everything (on a daily basis).

About to start a fatigue management course but do believe that I'm probably already doing it all I read around the subject and actually read the literature they provided from the MS team

I'm currently having a mild relapse post partum (high risk time) and recovery is slightly hampered by a toddler and newborn with reflux/tongue tie feeding issues (hopefully due to be resolved this week), so hopefully it won't get much worst than this!

So you're not alone and you have my understanding and empathy!

Thanks atrcts It is really hard isn't it - I have a 5yr old and a 3yr old. It is sometimes difficult to know what is 'normal' tiredness and what isn't! I have had very little input with the MS team so I am looking forward to chatting to them in order to learn a bit more about what actually does help. I often feel like I need to nap, but others have said that it is counter productive? Is the fatigue management course with your local hospital? Sounds interesting, hope it goes well. Sorry to hear that you are having a relapse - hope it passes quickly for you. It is hard enough coping with a newborn (and toddler!) let alone having to deal with a relapse too.

As an aside, I was wondering what exercise everyone does, if any? I was thinking of joining our local leisure centre gym. They do good yoga classes, have a pool etc. I used to go on the treadmill but that is now out of the question... But was wondering about weights and/or that vibration thingy you stand on, just as an attempt to tone up. Does anyone use those? Feel my fitness levels are fading fast as i used to run and do aerobics a lot but can't manage exercise that requires any coordination now!

Clarkykitten - it's a hospital course, but it's taken them 5 years to invite me so I think it's either new or I'm a guinea pig?!!! I'd be horrified if it was a 5 year waiting list!

When I was first diagnosed and had balance issues, my Physio (NHS) suggested I use gym equipment such as cycling, rowing and even treadmill (but that was with loads of practice first as I kept falling off! )

Hi Clarky - yoga for me. Probably should do some weights as well, maybe next month. Think you should aim for stretching and core strength

I gave up booze a week ago and have been drinking decaffinated tea for a few days. Eraly days but am sleeping a lot better, less hot flushes and last night (the first night for a long time) did not get up for a pee.

He'll everyone. Hope you're all doing ok. I've not been around as bring back at work has taken its toll. Plus I had a night out with my sisters last weekend and pretending to be my normal bubbly self took it out of me!

Have felt better the last couple of days though. Kids are back from their holiday tomorrow night and I'm dying to see them. Teaching every day next week too which I'm looking forward to but know I will need to rest as much as I can in between sessions!

Not heard about rebif yet. It's been 4 weeks so might give it one more then ring the nurse. Hope you're all being kind to yourselves.

Hi Moodyblue - great to hear you are feeling better. Me, can't wait to get the boys back to school as we definitely need a break from each other!

I think chase if you haven't heard from the nurse, as long as you are polite can't do any harm.

Moodyblue - I always have to chase my MS team too. I know they're over stretched (what part of the NHS isn't?!) but I find it really annoying, especially if it's related to a relapse. I'm telling you this, not to whinge, but so you know you're not alone

Well I chased them and it's a good job! Rang nurse on Wednesday who told me that the co-ordinator had made a 'monumental cockup' of the requests/prescriptions and mine hadn't been sent. So, she sent it 'again' and said I was basically back to where I was 5 weeks ago, looking at another 4-6 week wait.

Was really pissed off. I know that in the greater scheme of things another few weeks won't make a massive difference but I had been stressing about it.

But then yesterday bupa home health rang yesterday and I'm sitting here now waiting for my delivery!

So I'll admit to not being very impressed with my first experience of my ms nurse! She promised to send some info too when I saw her and that never came. Also thought that she was very unprofessional in how she described the co-ordinator (though she did say 'she's gone now so things should get better').

So now I can stop worrying about when it's coming and start worrying about actually using it!

Glad you have it sorted now Moody, but sorry it was such a stress! I hope using the meds is an easy adjustment for you.

I rang the MS nurse for the first time today; left a message on the answer phone so no answer as yet, but it is Friday. I don't really know exactly what I want to talk about though... have feeling I will just start to talk and then won't stop! Lots of Qs about whether I have RRMS or SPMS, managing symptoms etc Fingers crossed it won't take too long for her to get back to me.

hope that everyone else is doing ok? Back to the school run normality after the summer!

My MS team have let me down many times by not calling me back, and sometimes it has been in relation to relapse, the last time being when I couldn't pee properly- so I thought that was reasonably important! When I complained, they said that she had just been really busy. It was hard to complain because I do feel that we have a life long relationship (my MS isn't likely to go away!) and nobody wants to piss anybody off like that. However I decided that part of the reason I wouldn't want to piss them off is in case they start to ignore me, which is what they were already doing! So really I had nothing to lose and so mentioned it anyway.

The way I view it is that I'm trying to remain independent from them so I am not disappointed. The other thing is that they aren't the only avenue for help in the future, GPs also have access to a variety of different networks which can help. But it's not ideal, because with a problem like MA I honestly think the support from a medical team can make all the difference.

Hi, I'm just lurking and want to say hello (((hugs))) to all that need them.
DH was diagnosed with r/r ms 16 years ago, has been ill/well but is still working full time ( as a vicar) currently on tysabri, which has been good Our fourth child had just been born when he was diagnosed, we thought it was the end of the world and I was so angry but here we are, all those years later, and life is not at all bad.
Don't despair, keep away from "friends" who bring you down. The MS nurses are full of good advice, physios are useful, a good neurologist can make a big difference.
Lots of love to you all. Have a good day, listen to your body, don't let yourself get too tired.

Hi hoochymama - thanks for the pep talk (it's well timed!). Having a bit of a meltdown today. Work is rubbish, the kids are doing they're best to tip me over the edge and I'm stressing about starting rebif tomorrow.

Have you heard from your ms nurse yet clarky? Hope you get some sense out if yours!

Know what you mean about the lifelong relationship atrcts - don't want to get on the wrong side of anyone but equally don't want to dread having to talk to them because I don't think I'll get anywhere.

Back to the clinic tomorrow for first injection. Not sure how many I gave to do with her before I'm let loose!

Hope everyone is doing well and enjoying the cooler weather

Hi Ladies and welcome hoochymama1 -

All the drugs, injections, relapses seem like a different world to me. Can't remember what it was like not to be me now, think I really need to talk to someone with PPMS. Going to try and investigate some options near me. I am lucky (?) in that there is a very good support network near me including a local charity with its own centre.

I am officially confused as to what to do now. Should I complete my masters, volunteer in local charity or contact my old bosses and see if they have any work. At the moment I am dealing with things at home, the kids pretty well, doing physio and yoga. What will happen if I add another level of stress to things?

Hi Moody - hope the injection went well.

Hi Dededum. It was ok thanks. Feeling a bit achy now but the actual injection was easy.

How are you? Sounds like you have a lot to think about. It's so hard to know what to do for the best isn't it. My overriding urge is to do as much as I can while I feel that I can but then often end up feeling worse - boom and bust cycle!

Maybe think about which things you would get the most enjoyment/satisfaction from. I think in your shoes, if you can manage money wise, I would finish my masters before taking any work on. I really need to do yoga/pilates but at the minute it takes all my energy to go to work and sort the kids/house out. I need to take some time to plan and organise my time so that I have some energy left for extra things! I am going to have to give up some of my spontaneity and do things like planning/cooking meals for the week for example.

Hope you're ok though and manage to find some support and someone with PPMS to talk to. Do you have any more medical appointments due?

Before I had the diagnosis I wasn't coping. Now I have totally reined in what I am doing finding that I have more energy for the kids, the house, cooking and even DH. Enjoying it, though not very feminist, I was brought up to something very different. The dissertation would be over a year, must more manageable in theory but really wondering if there is much point as wouldn't directly lead to something else.

I always used to think of energy as something unlimited that you could top up with some rest, exercise and good food. Now energy is precious and you have to think where one is going to use it. That is another reason to think carefully about what one chooses to do. I used to think I would live to 80+, just over half my life left and I would be active, like my parents. Now not so sure

Thinking of writing a letter to the people in my life, setting down what it means in practice, my particular version of MS. As a family we are not good at sharing. Might do it tomorrow, DH away on business.

Hi Dededum. Hope you're ok - you sounded a bit down in your last couple of messages. Did you write the letter? Sometimes that can help can't it, even if you don't send it?! I could do with writing one to myself actually.

I had a rough few days last week, felt really low and quite lonely but feeling brighter this week. I've been worrying about work. I teach in higher education and was worried last week teaching on a bridging unit that the students might think I was drunk - every time I wrote on the white board then turned round I thought I was going to fall over. I ended up pushing a wheeled chair about so I could sit down quickly if I needed to!

Do you think you have reduced what you do or are you doing as much but different things? I need to allow myself some time to do things that I enjoy and to do some exercise (going to try Pilates I think). Difficult though as if I feel I have the energy I usually end up cleaning, shopping or ironing!

Sorry for rabbiting on anyway. Hope you are feeling ok.

Thanks Moodyblue, not down as much as reflective.

Do you tell people you have MS or do you keep it private? Work much be tough, when I was doing my masters I was surrounded by all these twenty year olds. Odd things like walking to another lecture hall with the group was difficult as my gait was odd and I had to work to walk in a straight line. I know what you mean about appearing drunk. Also sometimes I just phased out of conversations.

I am doing less intellectual stuff, now more 'homely' stuff. At the moment am very slowly working through the house sorting out/tidying/cleaning. I hate cooking but have been working hard to feed the kids some decent meals. Then lots of stuff to support myself physically.

My biggest change is instead of beating myself up because I wasn't able to do everything is to pat myself on the back when I manage to get something down. Today I went to supermarket, cooked, did the admin and cleaned some rubbish out of the dining room as opposed to sitting on my backside watching Millionare Matchmaker on ITV2

Pilates is good but I would HIGHLY recommend Physio as it will give you some exercises to target problem issues, then when you know what you need to do you can practice at home and then when you do Pilates / yoga etc.. you will now how to practice. If that makes any sense?

Hope the injection helps? Is it a regular thing, every day?

I do the injection three times a week, so I'm going for Sunday, Tuesday and Thursday nights then at least if I do get dodgy side effects they won't wreck my weekends! Although I seem to be sitting on my arse watching celeb big brother most of the time anyway!

I have told people about it - to start with I was telling everyone as it was such a shock! Ive not told students though and would feel very strange about that as I don't want them to see me differently or worry about me! It is difficult to know what to do though as I also zone out and a big part of my job is one to one academic support. Have done a bit this week and think its been ok but when all the students are back and it's in full swing I could be seeing 7 or 8 students in one day, all from different courses. Will be interesting to see how my brain copes with that!

Hopefully the injections will help but it could take some time. Looking back I've been relapsing practically back to back for the last 12 months (it's actually hard to know if its been one really long relapse or 4 or 5 shorter ones) so it is quite active at the minute. The medication potentially reduces the number of relapses by up to 30% and can reduce their severity.

Did you see physio privately or through nhs? And was it regular or neuro physio?

Physio is through NHS - I think is it probably regular but she does have experience of MS. I get 5 through the NHS, then I have to go private. I think I will as it is really helping. It makes me feel more in control.

Before my masters I was working in postgraduate education careers advice. I could sort of do the job in automatic, and like you I would see students one to one. That bit was ok, but walking around campus was tough and felt the wider social interactions difficult.

Looking at the relapses it looks like you need to find some stability, reduce the stress so your body can recover. Small steps and take back some control.

Hi everyone. My mum has had her MS diagnosis for 22 years. She's still going strong. I don't know if anyone has mentioned the magazine MS Matters? It's produced by the charity MS-UK. It's really upbeat and has a lot of information about new treatments on the horizon, dietary changes that help and personal stories etc. A nice adjunct to the MS Society mag.

Hi NutellaNutter - great to hear your mum is still got strong, that's what I am aiming for!! What's her secret?

Thanks I'll check out MS Matters as well.

How is everyone?

I have been investigating diet and found a big movement for the removal of lsaturated fats as supporting slower progression of MS. The book is called 'Overcoming MS' and there is also a website with forums. I am going to give it a go - as really what have I am to lose, there is nought as good as walking feels! The diet is basically vegan with fish! Bit of a shock to see how much saturated fat your food cupboard includes! I think I am going to get quite boring very quickly!

Hello everyone, can I join the thread?
I was diagnosed 2003 but I had first attack 1991. Lucky ok, apart from sensory and foot drop.(using a fes),whigh is apita. Dedumum has it right,"nought as good as walking feels", too right!
I saw something on tedtalks about diet and ms,which called for eating cruciforous veg, green veg, onions etc.and no refined foods. Is this the same diet? Sort of paleo-diet.

Sort of - this calls for less than 20g of saturated fat per day, ideally 10g, no dairy, no meat, ONLY extra virgin oil and you can eat as much fish as you want, can drink coffee and booze in moderation.