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Just diagnosed with MS

(223 Posts)
Dededum Mon 08-Jul-13 18:20:48

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.

LadyMaryQuiteContrary Mon 08-Jul-13 18:31:29

Hi, Dededum smile

I have it too. I was diagnosed 4 years ago and have relapsing remissive MS. Take some time and let it sink in, it's a big shock. Get to know your body, it will tell you when it wants you to stop and stay healthy as it will really help. You will find a way through this, take each day as it comes. It's OK to cry, it's OK to shout but now you know what it is you will find a way. You can still do all of the things you used to, it's not stopping you. Just take your time and be kind to yourself. There's a few of us on here with this so you're not alone. You're welcome to PM me if you need a quiet chat. smile

Dilidali Mon 08-Jul-13 18:42:13

Hi! Sorry about your diagnosis. It sucks, that's for sure.
Take one day at a time.
If you need one, here's a hug.

Dededum Mon 08-Jul-13 18:54:41

Thanks LMQC and Dilidali - think I have primary progressive MS. Can't remember if the doctor told me but it fits.
Think I have probably had it about 5 or 6 years, have done yoga and massage which helps the symptoms. The yoga is hilarious as I am so terrible at the balances, often falling out of the simplest tree. And I thought it was because of my super high arches...

One thing is I live on top of a hill, great views but the walking sucks.

Got someone coming over tomorrow to give me info. No doubt I will be back, hubby in States, don't want to drop this bombshell over the phone. Lets hope he does not phone as it will be hard to keep stum!!

LadyMaryQuiteContrary Mon 08-Jul-13 19:00:17

smile It's OK. Write a list of questions to ask for tomorrow. Every patient is different so it may seem scary at the moment but your MS isn't going to be the same as anyone else's. Have you been given some steroids? They can help but it depends on how long it's been since you were unwell. Some people are crap at balancing so it may not be down to MS. Ask the person visiting you tomorrow about medication, she'll know more then anyone.

Dededum Tue 09-Jul-13 16:19:37

Hi LMQC lovely MS praticitioner came over today and gave me loads of leaflets to read. Feel quite calm.

I have PPMS which can't be treated all you can do is manage it and keep relaxed. She was quite positive and said that I had probably had it about 6 or 7 years and the symptoms are quite manageable (walking, bladder and tiredness) no reason for it to change. Not looking at the MS boards because I want to keep the positivity going!

Next challenge is DH, don't see him until Saturday.

LadyMaryQuiteContrary Tue 09-Jul-13 17:58:45

smile

It's important to stay healthy. Have a look at your life and see what causes you the most stress, then do something to make it easier. Mine was my job so I ditched it (easier said then done). I find the supermarket a waste of time stressful so I order online. I get pins and needles in my hands as well so it also means I don't have to carry the shopping home. Diet also has a factor, so ditch the crap! I found acupuncture really helped with the nerve pain and fatigue but finding the right doctor can be a problem. There's a register of qualified chinese doctors online if you want to look into this.

It's great that your symptoms are manageable, it may help to keep a symptom diary so that you can work out what's normal for you. As with all diseases, your outlook does affect things. You still have so many wonderful things ahead of you and there's no reason why you can't still do these, just stay healthy and take each day as it comes. No one's going to moan at you if you don't want to go shopping or for a walk on Monday (or Tuesday).

Your DH is going to worry, it can't be helped. He won't know enough about the disease and the first thing that will go through his head is 'is she going to die?' Then he'll remember all all of the worst case scenarios on the TV of patients in wheelchairs and he'll panic, so you'll need to plan what you're going to say in advance. There's people who live for many years with all sorts of MS and have no problems at all. You don't have to look at the MS boards. If you do decide to take a peek just remember that their journey isn't going to be the same as yours because we're all different. Hope for the best and take each day as you find it.

Just shout if there's anything that I can do for you smile.

moodyblue Wed 10-Jul-13 13:49:43

Hi Dededum

I was diagnosed with Relapsing Remitting MS 6 weeks ago. For me, it was a shock, as MS wasn't something anyone had mentioned ever before. I went to the GP with pain and tingling in my face and dizziness and thought I had an ear infection. She did an urgent referral to a neurologist and had MRI scans and diagnosis within 3 weeks.

I am also really struggling with the tiredness and I'm frustrated that I'm not recovering from the relapse as quickly as I thought/hoped I would.

I've not seen an ms specialist or ms nurse yet - appointment is on August 2nd - so waiting to find out more about treatment.

Hope you are doing ok and not worrying too much about telling your husband x

LadyMaryQuiteContrary Wed 10-Jul-13 14:02:43

Hi, moody smile

I know it sounds strange but it helps to limit the amount of sleep you have. I found the more I slept, the more exhausted I became. I'd drop ds off at school, come home and sleep until I had to collect him. I'd come home and feel so exhausted that I'd fall asleep again. I rarely nap during the day now and it really has helped. There's medication that you can get as well if you want to go down this route.

Dededum Wed 10-Jul-13 15:30:24

Hi Moodyblue - sorry hear about your diagnoses.

I told my husband last night, he is in California o had to stay up to 2am. He was lovely and felt a huge weight of my mind.Knackered though now and the kids are back from school

My MS is different, I have been struggling with walking for about 7 years, left it for 2 years till went to doctor, then physio & Pilates. Struggled on for a bit more did less walking.

Then tried personal trainer to get fit for about a year. Top half stronger but not my bottom half.
Went back to doctors, suggested neurologists, cancelled appointment 2 days before because I thought it was silly.

Then hot yoga, massage therapy and podiarist in an effort to sort myself out.... Helpful and felt better

But podiarist suggested neurologist, made a new appointment, tests and finally on Monday diagnosis
Doctor said that having caught it earlier wouldn't have made any difference, except for the confusion and pain.

All well got to take it in your stride, oh there are going to be some great MS puns grin

moodyblue Thu 11-Jul-13 11:32:52

Hi Lady Mary - that's interesting as I've had more sleep this last few days as I'm on holiday from work so have been having naps and you're right, I do feel worse! Will stay out of bed today and tomorrow and see how I go.

Dededum, I'm glad you've been able to tell your husband and haven't got that hanging over you any more. I was wobbly about telling my family (another MS pun there - did you spot it? smile)

I have been thinking about things going back years and wondering if they could all be MS linked but you are right that it probably wouldn't have made any difference if they'd diagnosed it sooner.

How are you all getting on with the heat? I've found my symptoms have been lots worse - balance is off, buzzing like crazy and weak leg.

LadyMaryQuiteContrary Thu 11-Jul-13 16:34:52

It's hard getting out of the cycle. I found it worked to stay up as late as I could, then get up early. It worked after a few days (but I was a zombie in the process). The heat does make it worse so take it easy and keep cool. Illness and stress can hamper things as well.

Hope you're both well. smile

Dededum Thu 11-Jul-13 19:13:09

Another late night conversation with DH. I am very lucky.

Mum and dad next people to tell, been trying to catch them but think they are away. Have to get them both at the same time and early in the day, no one likes shit news at night. Not sure what they will say, they are über fit and very active.

Then the boys, but not until the summer holidays. They are 11 and 10.
Did you tell their kids? How did they take it?

LadyMaryQuiteContrary Thu 11-Jul-13 19:40:22

You don't have to tell anyone who you don't want to. I haven't told my mother, she's a worrier and she was in hospital herself when I was diagnosed. I told my sister and brother and we thought it best that she didn't know as it's kinder for her. She tends to dwell on things and she suffers from depression.

I told ds that I have an illness where the cells in my body start fighting with each other and make me unwell. He asked if I was going to die, and then asked how he could help me. He's 14 now and was 10 when I was diagnosed. It's just me and him so he's seen me when I've relapsed as I can't hide it (which has only been a couple of times, thank goodness). He won't leave me when I'm sick, not even to go to school, and I feel terrible about that. He's an absolute superstar as he'll help me get to the doctors and will help me cook. I do feel sad about this and I will pretend that I feel better then I do just to make sure he goes to school so he's only had 2 days off because of this. Children do adapt, they are far stronger then we think they are but I don't think that you need to tell them everything if you see where I'm coming from.

Chat with your husband and plan together who you want to tell and what you want to tell them. smile

moodyblue Thu 11-Jul-13 22:47:57

I told my boys (13 and 15) as they knew I'd been ill and had hospital appointments. I didn't want them worrying about something worse than it is (both have friends whose mums died of cancer). They were fine once they knew I wasn't going to die! They made the right noises about helping me (I'm on my own too) but that's gone by the wayside with the nice weather and, to be honest, I'm glad they're not dwelling on it.

Ladymary your son sounds like a lovely, caring young man!

Dededum Fri 12-Jul-13 08:55:04

Hi ladies - thats tough dealing with this on your own. I am lucky I have support. Again LMCQ your son sounds sensitive and caring. You are right moodyblue you want them to get on with their lives.

My 10 year old is being a PITA at the moment, probably because dad has been working away a lot at the moment. My 11 year old is much more supportive but I do worry that this news might hit him tough, he is more sensitive and has problems at school. So not sure if I should say anything at the moment.

I intend to tell my parents, they are as tough as old boots really. Today if I can track them down.

Before I was just knackered, now I analyse everything..... aaaagh! I am not working at the moment, am doing a masters which I have been finding really hard. But it on hold now and my levels of stress have decreased. Yesterday arranged DS2's bedroom and today DS1's bedroom. Small steps.

Thinking cleaner, gardener (we have a big garden and I have done nought this year so over run). Just got to get DH agree.

moodyblue Fri 12-Jul-13 09:19:01

I arranged yesterday for a gardener to come next week and give me a quote for sorting out my large very very over-run garden! I also have a cleaner once a fortnight for 3 hours. I was going to say I'm not used to feeling so tired but then realised I am - I've just always told myself I'm lazy!

I found with my ex I could get him to agree to paying for help with things was by telling him he would have to do it himself otherwise! The first time I raised splitting household tasks he said he'd do washing up if I cooked - then bought a dishwasher!

If your children don't need to know yet (ie they're not suspicious that something is wrong) then wait. I thought about it like sex education - you just tell them what you think they can handle/need to know for their age and they'll ask questions if they need to know more.

What's your masters in?

moodyblue Fri 12-Jul-13 09:19:57

Good luck with tracking your parents down by the way!

LadyMaryQuiteContrary Fri 12-Jul-13 11:37:10

He's a lovely boy. I told his father when I was diagnosed and he said nothing. He doesn't ask how ds is or if there's anything he needs and I'm taking him to court at the end of the month for maintenance so this was no surprise. I'd have expected him to talk to ds and make sure he was OK but hey ho.

There's a big difference between 10 and 11 in terms of maturity, I think. Could you just tell them that you're unwell to test the water? Make sure you fill in the DLA form as it will really help. Let me know if you need a hand as they are a nightmare to complete.

I'm a bit envy at your cleaner, moody. I find that I'm a bit of a liability in the kitchen around the oven so a chef would be nice grin

Dededum Fri 12-Jul-13 12:33:49

Masters in international politics, used to be a solicitor so was hoping to do something in the charitable international field. Think I was kidding myself a bit smile

Spoke to my mum this morning, dad had just flown out to the States. I kept apologising for dumping this on her, but she was lovely and has an old school friend with MS. Just my brother to tell now, not particularly close but he needs to know.

Yes the 11 year old is nearly 12 and the 10 year old has just turned 10. So big difference. The lovely MS practioner gave me some books, has offered to talk to DH, my mum and the kids if I want. She also offered lots of scary services like getting hand rails fitted, bladder & bowel support, adapted cars....It was almost like her and the consultant could look into the future.... Anyway enough of such thoughts, I suppose I would call myself an optimistic pragmatist. No illusions but also no point on dwelling on 'what if'?

Thanks for the offer on the DLA but don't need that at the moment. Oh yes to the chef, cooking for two picky boys is so depressing...

Dededum Fri 12-Jul-13 12:36:04

PS: Moodyblue, am knackered but have never managed much cleaning. Don't think of it as lazy more its boring.. And there are more important things to do grin

Dededum Sat 13-Jul-13 11:38:12

DH in taxi back from airport smile. Hoping that I will get dinner cooked for me tonight and maybe the odd cup of tea!!

LadyMaryQuiteContrary Sat 13-Jul-13 14:51:27

smile

moodyblue Sun 14-Jul-13 12:24:40

Hope you're both feeling ok LMQC and dededum. I've been visiting family for a couple of days. Thought it would be a nice rest but its exhausting having to concentrate on seeming my normal self (I know I don't have to really but the thing that's stopping me having a meltdown about diagnosis is doing whatever I can to stip other people feeling sorry/sad/worried about me).

Dede - what did you get for tea?!

Dededum Sun 14-Jul-13 12:43:21

Moodyblue - This weather is exhausting in itself, do your family not know or are you just trying too hard? Think you are allowed a meltdown. Can't believe you haven't seen a MS specialist yet, that must be tough. Because not only do you need to talk about treatment but you need someone to talk about the diagnosis. I have made an appointment with my GP as well so I can get myself on their books and get referred to MS physio.

Anyway hubby came back and has been lovely and very supportive (loads of hugs). He drove 20 miles to Homebase and bought some garden furniture to put on our patio. Totally beyond the call of duty. So I have been sitting outside and soaking up the sun. Got a lovely take away curry for dinner!

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