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]

The walking through treacle thing, I mean?

[Dededum]

One day after about a hour I just started hobbling. Then slowly the distance got shorter, had a few incidences of just falling over flat on my face. My right leg moves all wrong, if I try and walk to far I don't know where my foot is going to land, I am not in control of it. Wouldn't call it treacle but I have to concentrate hard when I walk, hills and uneven surfaces are tricky. Doesn't help that I live in a very hilly area.

But, I have tried everything - acupuncture, massage therapy, personal trainer, Pilates, yoga and now MS physio. And, lthough you can't cure this you can make it a bit better! I think the keys are 1) Flexibility - yoga is great, but even some gentle stretching will help 2) Pain relief - My hips were so sore, but after some expert massage the pain has pretty much gone and my new hit 3) retraining muscles which have got into a habits so physio.

I am in a better place than I was about 3 years ago, I fell over, my legs were so stiff they were like tree trunks and I was in a lot of pain. Now, pretty much pain free, don't fall over and my walking gait at times look normal. The distance is still a working progress but now I know it is MS I feel reinvigorated.

Lecture over - take care.

DH and I are leaving the boys with my parents and going off tommorow for a few days at a posh hotel. Hurrah!

[atrcts]

Hello thought I'd stick my nose in to say hi, I'm an MS-er too.

I find (like many of you) that fatigue is a huge problem, and I try to manage it with a daily sleep. I can only describe it as 'hitting a wall': I can't thinks straight and find myself too easily staring into space with a blank look! The only way to restore that I'm-a-human feeling again is to sleep.

I will try the low carb lunch idea though, to see if it helps.
Sleepless nights wise I am fighting a losing battle at present as I gave birth 10 weeks ago (insert zombie face!!!!) and have a 3.5 year old who still wakes at least once if not 3 times most nights.

I had been nursing for 18 years and lovely my job, but couldn't keep it due to the fatigue. My neurologist didn't offer fatigue medication, and the MS specialist nurse reported they don't really work so that's why they aren't offered.

I have been offered interferons however I declined them and self funded LDN instead (for a trial). I'm really glad I did because it removed some of my symptoms (sadly not the fatigue though).

Being aware that LDN should be used in conjunction with a sensible diet, I looked into the Dr Swank diet for MS and was amazed to find that in his 34 year study almost no one relapsed if they stuck to the diet religiously.

I'd love to have time for a regular massage etc, but am not sure how I'd realistically factor that in at the mo, I am rarely free to even use the loo without hubby or one of my kids hunting me down!!!!

[LadyMaryQuiteContrary]

Hi, atrcts Congratulations on your new baby I think if you need to nap then try to make sure it's early in the morning as you're less likely to get a disturbed night. I imagine having small children is exhausting for you as you're not sleeping well at night, disturbed sleep is really tough. Sorry to hear about your job Did part time work? Community nursing? I'm really lucky, since I had a course of acupuncture a few years ago the symptoms are minimal. I do have the odd day where I'm knackered but it's not as bad as it was before. I'll have a look at the diet, I've not heard of that before.

Welcome

[atrcts]

Thanks LadyMaryQuiteContrary... I tried very very part time over a few months but found it was too variable.

I have memory issue now with ms, as well as balance problems, so I looked like a confused patient staggering drunkedly - not really a good ambassador for the NHS!

Also trying to work twice a week (Mon and Fri) put me in bed for 3 says between the 2 days I worked, just to simply survive.
It wasn't sustainable and HR offered a medical retirement. After 2 months protesting and pleading, I realised that they were right, and my usual management of anything challenging (which was to push through determinedly, regardless), didn't work with MS, so that was that.

[Molly333]

Sorry to jump on yr reply but could you offer me done advice as to how to support a friend who's been recently diagnosed and looks frightened (she is a single mum with little support) and I want to help her

[LadyMaryQuiteContrary]

I'm sorry, atrcts. Have you thought about teaching trainee nurses? It's a lot less hours. I tried for a few years (student paeds nurse, then took a year out and started a radiography course). I couldn't manage it at all full time and would get into so much trouble when I took time off to sleep. It was crazy, they would rather I went in and cared for patients when I could barely function and I refused to do it. I work part time but the pay isn't half bad.

Hi, Molly. You can point her to the thread. Tell her to take each day at a time and it's really not going to be as bad as she thinks it is. The media only show the disease at its very worst and a lot of patients only have a few relapses. Depending on how old her children are she may need help when she relapses as I found it impossible to cook, the MS nurses at her hospital will be able to give her some contact details for places where she can go for help. My son's 14 so it's not so much of a problem but I'd imagine it's hard if she has a small child. Social services/home start can help but she needs to ask them. You sound like a lovely friend.

[atrcts]

Molly333 One of the best things you can do is not ditch her! Am sure you aren't that type of friend as you're bothering to ask how you can best support her. However, it might help you to be aware that with a diagnosis like MS, people often don't know how to act and feel awkward so avoid being around the friend anymore instead. I was surprised at the friends who left and those who I thought were just acquaintances, who were really there for me. It will mean a lot to her to have you on this journey with her.

If she looks frightened a good way to support her is to explore what may be her fears. Somehow that dulls the power of fear a little. Be aware too that some people use denial as a coping mechanism, which they may need to do for a bit (while they get their head around the new information), and others want to know everything and face the potential worst.

I can imagine your friend may have worries about how she could look after herself and who would help her with the kids when she's having a relapse. Many MS Mum's worry about having the kids taken away because they can't cope. Doing a little research to keep yourself informed could help if she voices such fears. For example, there are agencies who would be able to offer physical support, DLA etc for financial support, and MS specialist nurses who can point her in the right direction if and when she needs it.

It's easy with MS to fear everything, but every person experiences MS differently, and so what your friend may fear could never happen to her. On the other hand, there is nothing worse than someone playing down a potentially dark future when there is that very real possibility. It's all about balance and being realistic and optimistic at the same time.

Some people find it helps to go to a support group, I personally never have, but maybe if she was interested you could offer to go and check it out with her for moral support.

I suppose it's helpful for someone to hear "you don't have to talk about it if you'd prefer not to, but I am here for you in any way I can be, even if it's just to listen"... its kind of nice to feel you're not walking a road entirely alone.

[atrcts]

LadyMaryQuiteContrary teaching was something I discussed in my bargaining with HR and Occy Health, but I would need to have a functioning memory and ability to concentrate, which often failed me at short notice. I have gone from being a competent reliable person to completely the opposite. It's hard to come to terms with not being reliable anymore.
Also my cerebellum lesion affected my ability to read for any length of time, so it would be hard to even keep myself updated with any consistency. Oh I get my moments of glory when my memory works really well, but those moments are (sadly) fleeting, and certainly can't be depended upon. a bit like the British summer!

[LadyMaryQuiteContrary]

Brain's are great at rewiring themselves, atrcts. I bet there's loads of brain gym type exercises that will help. It doesn't make you feel good about yourself when your head's like this and I think it can make you feel worse. I remember the telling off I got when I couldn't get the word for one of the (really easy) bones out of my mouth when I was asked. I knew what it was, I just couldn't get the word out and I felt so stupid. I think fatigue plays a huge part in things.

[atrcts]

Yes they are - neuroplasticity is an amazing concept. Certainly, compared to how I was on my initial presentation, I have 're-wired' more than I dared hope for. However, although I can once again remember my email password and credit card PIN, there are times when I can't again (usually when I have a flu/cold etc and the body is working harder than normal).

I can now read for short periods, but very quickly can't take in what I'm reading anymore, so yes, there are improvements, but never restored back to how I was before MS 5 years ago. Hence the required optimist/realist viewpoint I mentioned in a previous post; it's 'good' but it's still 'not so good' at the same time!

[atrcts]

Ps - forgot to mention - in the first few years on diagnosis I worked on brain exercises (Luminosity etc) but in the latter years haven't because all my energy is given 100% to the kids and any 'spare' time (what's that, with a toddler and newborn?!!!) is spent trying to snatch a rest to keep me functioning the rest of the day.
I'd say brain training is good, but can sap the brain and tires you out quickly, especially when the brain is already working flat out to carry out normal every day tasks. My neurologist said (regarding fatigue) that you can't be surprised really. The brain is working 3 or 4 times harder than a non-MS person, with every simple activity (to just lift my limbs when walking or eating etc).

The other thing that interests me is how my last MRI scan showed the lesion burden is "significantly increased in size and number", but in the absence of any new symptoms or worsening of fatigue. My symptoms were much much worse when I had only 6 brain lesions, but now they seem to have stopped counting them, and yet, as mentioned earlier, the brain re-wired itself in so many ways. That's the thing about MS, it often doesn't follow a logical path!

[LadyMaryQuiteContrary]

Sounds like you've got your hands full

I've only had one MRI which was about 4 years ago so I've no idea how it's affected my brain. I did offer to be a test guinea pig for research but haven't heard back from them yet.

[Dededum]

Hi atracts - welcome to the thread.

Young kids are exhausting even when you don't have MS. It's easy to find ones self overwhelmed by the myriad of things that need doing. When baby is a is bit older then hopefully your eldest will be able to help out a bit more.

Hi Molly33 - obviously being there / listening for your friend is great. But practical things are great, almost treat it like a bearevement. Make up some meals that she can freeze, package them in some containers and take them round. Or go round to see her, get the ironing board out and iron some clothes, maybe if the place is looking a bit unkempt chuck her out for a hour or two and get the Hoover out. Don't underestimate how much energy she expends to do simple things.

[moodyblue]

Hi everyone and welcome atrcts and Molly33. I've just got back from cambridge where I met up with a friend who I've not seen for a couple of years. Had a lovely time and tired now, but happy. Back to work tomorrow after a four week break. Will let you know how I get on but I'm already working out how much money I think I can afford to lose if I need to cut my hours!

[LadyMaryQuiteContrary]

You can apply for DLA if you need it, moody. They gave me the lower rate because I can't cook without burning myself

[Dededum]

Good luck Moody.

Think I am going to go teetotal, had half bottle last night and didn't sleep well and bit yeuchy this morning. Not worth it.

[LadyMaryQuiteContrary]

You don't need to go teetotal, just drink less Wine can make you feel iffy if it has the same alcohol content as meths. Organic wine has less rubbish in it so less likely to make you feel unwell. I'd have a glass rather then half a bottle.

Hope you're all OK.

[moodyblue]

Well I've survived 2 days back at work but can't believe how tired I am. Fell asleep when I got home earlier and I'm tucked up in bed again now. Rang the ms nurses today about funny vision and balance and also with issue with taste - cold food and drinks tastes awful. Kind off a bit metallic and just wrong! Nurse said sounded like a sensory relapse and has made a note of it. Now my left thigh feels alternately hot and cold.

Had letter from the dvla about putting me on 3 year driving licenses. Feeling a bit down now that I'm realising its not something I can just brush off.

Hope you're all doing ok?

[Dededum]

Sleep tight Moodyblue. Have you got an appointment with the MS nurse?

[LadyMaryQuiteContrary]

Hi, moody. You're really not far from me, is there anything that I can do to help you? Transport links here are fab, you get around quicker without a car. Did the MS nurse suggest any steroids?

Hi, dededum. How are you?

We're well. We've done naff all over the summer but we're off on holiday for a few days next week. The clock in my room isn't working so I'm finding that I'm getting up late and unable to get to sleep at a reasonable time.

[moodyblue]

Hi dededum and lady mary. Feel a bit better today I think, thanks. I think it's just going to take some time to settle back into work. If I'm still not right in a week I'll ask about steroids. I suppose I think as long as I can walk I shouldn't have the steroids. My boys are going on holiday with their dad on Sunday for a week so I can chill out then!

Going to see my sister up in the north west at the weekend as its her 40th birthday (the big 'do' is at the end of September - 80s theme and I'm going as alexis carrington

Thanks for your kind offer lady; I'm good at the minute but we should arrange to meet for coffee.

[LadyMaryQuiteContrary]

You have to nag them. I had huge problems getting my last course; the MS nurse faxed my GP. My GP didn't believe the dose was correct so wouldn't prescribe them. When she was told the dose was correct the pharmacist wouldn't give them to me because of the dose. I knew it was correct and the GP told him it was correct but he still wouldn't prescribe them. They did after going back to the GP again but they didn't work so I ended up needing a 3 1 hour IVs at QMC. It's really not easy to get there and back on the bus so it wasn't the greatest amount of fun I've ever had. The drip did work pretty quickly though and I have no after effects at all

The party sounds like fun! :D Let me know when you're free and I'll work around you.

[Dededum]

Think, like me Moodyblue you are being brave. I have drugs for spasticity and think as long as I can walk I don't need them. Just realised that is stupid as am an holiday and would have been perfect time to try them out!

Anyway ready to go home now, back on Saturday. DH back at work and nothing planned for the kids next week.

[clarkykitten]

Hi everyone and welcome atrcts. For some reason my computer is playing up, so I can't access this thread all the time, but I am glad to catch up :) I took a couple of days off work this week (I work 3 days/wk normally) and the kids were at their GPs, so I managed to have a good chill out. Thanks for letting me know your experiences of walking dededum and it great to hear what helps everyone. I have a yoga DVD I want to get into going everyday, I think it will really help my leg tightness. I haven't rung the ms nurse to chat yet, but am still planning to. I hope everyone is having a lovely bank holiday weekend :)