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Is MS Life Limiting Illness?

(100 Posts)
MrFranklyShankly Sat 17-Sep-11 09:36:51

HI everyone,

Have spent ages looking for somewhere to ask these questions, didn't know where to post them so maybe here might be the best place? currently going through tests to see if I have MS, don't know a whole lot about it, started having some of the symton's about a year ago, of course didn't think it was MS then, just passed them off as one off things, like the numbness in my face that would come and go, the weakness in my arms and hands that would come and go, but over the last 3 months these things have been more consistent.....loss of balance is getting worse, other things like short term memory is quiet bad and a constant feeling of my body shaking from the inside is driving me around the twist.......so GP doing tests, tells me it could take up to a year for a definite diagnosis? Is this normal??? I'm very scared as I have no idea what to expect or whats ahead of me, my DH is also afraid (but trying not to show it) haven't really told anyone like friends or family, too scared to say it out loud.....just looking for some advice and reassurance really of whats ahead or what to expect with tests?

Some weeks are fine, I'm back to me again, but then if I have any stress at all or have any form of tiredness (which is run of the mill with 2 small children) it hits me and stays for a few weeks, the weakness, dizziness, and numbness down one or both sides...I'm just so confused at the moment and so up and down......today's a bad day.......

Jux Wed 28-Sep-11 00:51:56

I was dx with ms in 2002. I'd had two major attacks about 11 years before that, but it went undx. Once it was dx a lot of things that had come and gone since I was in my teens suddenly made sense. I'd always said I was a mass of minor ailments grin

It wasn't life limiting for me at all. I used to be a stage manager at the Albert Hall; I have taught autistic children, I have sung professionally all over Europe, I spent months in Sicily teaching some mafia guys English conversation (with no swearing!). And all the rest.....

I'm an ageing old bag now, and the pain/fatigue and stuff have been catching up with me over the last few years, but op, I'm in my 50s now! I've just started a maths degree with the OU, though, so there's life in the old girl yet!

Jux Wed 28-Sep-11 00:53:46

Hi there Belle, how're you, and your lovely boy?

belledechocchipcookie Wed 28-Sep-11 11:06:34

Hope you're OK Op.

I'll send you a DM Jux smile

Jux Thu 29-Sep-11 09:07:56

Hi Frankly, how are you today? Have you nagged your doctor yet wink? In the meantime, lots of rest. Rest will always help no matter what the problem is. Could you get signed off sick for a couple of weeks?

belledechocchipcookie Fri 30-Sep-11 13:54:41

Hi Frankly, I hope you're OK.

MrFranklyShankly Sun 02-Oct-11 09:09:47

Hi Ladies, sorry for not being on in a while, hope ye weren't worrying.......Hi Jux, great to read your post, its very reassuring to hear things like this, sounds like you've done some interesting things (stage manager at the Albert hall wow,can you tell us who ya met? talk about stress!) and that's exactly how I feel, a mass of minor ailments....and yes I have been nagging the doc all week basically, ended up taking the rest of the week off work... Tuesday night was awful for me, it seemed like everything was wrong, my balance was terrible, room was spinning couldn't even stand....weakness in my arms and legs, the horrible vibration feeling every time I lay down in bed, and then with all that I think I took a panic attack! So back to the doc again the next day and he decided to admit me to hospital, but by the time I got there (after waiting for 2 hours to be seen by someone) they told me I wasn't really an emergency case for having a scan as I seem okay, and admittedly I was better than I had been the night before, so went back to GP and he gave me some anxiety tablets if it happens again, he is also pushing for the scan, but its a crap health system we have here........he also gave me tablets for vertigo (stemicil I think they're called?) I think they have helped my balance a bit, but things aren't really changing much, was the best I've been yesterday, went for a massage and some reflexology and was fine until I went to bed after falling asleep I wakened with all these symptoms again.....I don't know one day I'm fine and the next it just comes out of the blue and floors me......Could this be vertigo? Could it cause all of these things?? I have started having night sweats too, I had these a few years ago and I blamed the Mirena Coil for them so I had it taken out.........I'm starting to hate going back to by GP time and time again, I afraid he'll think I'm bonkers and imagining all of this......hopefully there will be something this week......Rest is def the best thing Jux your right, I do feel better after a good days rest, but then the next day I think I can go back to doing all my usual things again and by that evening end up feeling......anyway rant over, feel like such a frigging moaning myrtle! How are things with you all??

belledechocchipcookie Sun 02-Oct-11 16:10:29

Hi MrFrankly, so pleased you've returned. Your GP won't think you're imagining it. It's great that you've taken some time off, you really do need to rest. It's still very important that you get a scan. If there's a MS society branch near you then it may be worth your while popping in to see them. You're not a moaning myrtle, this is a stressful time for you x

Jux Mon 03-Oct-11 01:06:40

Hey Frankly, you're definitely not a moaning myrtle, and your doc won't think so either. He'll be wanting to know as you do about what the cause is.

My mum used to take stemitil for vertigo. It's pretty good, though not terribly strong - she took it for travel sickness originally, long before she started to get vertigo. I have a feeling it's one of those cumulative drugs (belle will know more about that than I do, I think?).

It is terribly tempting to overdo things after you have rested for a while, but just for now, I think you need to look on yourself as a kind of convalescent, and take things easy. As rest is making a big difference to you, then it's a good idea to do a lot of it in order to reap it's benefits in the longer term. You'll recover quicker if you don't yo-yo about too much from day to day, no matter what is at the bottom of your current state.

MrFranklyShankly Fri 07-Oct-11 10:31:23

Hi Belle & Jux,

Well I have finally got a date for my MRI for Tuesday next week so I'm very relieved about that, although I've never had an MRI, dont know what to expect?. I dont know if the vertigo tabs are helping buy my balance is definitley improved. Took the start of the week off work as I was feeling awful, the power kept coming and going on my left side and that awful vibration feeling was there constantly....and I just could not sleep, sooooo tired but the minute I lay down in bed.....ping.....couldnt get the brain to switch off at all...and then took the tootache!!! I really need to find whoever has the life size voodoo doll of me! So got my tooth out and everything seems to have settled down again.....my mind was racing then could it be something as simple as a tooth infection causing all this.....although it wouldnt explain the incident of this that I took last year, and I'm sure the toothach would have appeared sooner?? well I'm feeling great today so I'm going to enjoy just feeling good! and at least I should find out soon enough whats going on.....(hopefully)....hope you ladies are doing well......and yes Jux I totally agree rest is the best cure no matter what's annoying you, I'm def going to pay more attention to that.....my new boss is gonna love me!!

Frankly

belledechocchipcookie Fri 07-Oct-11 12:35:50

Hi Frankly. That's great news. Try not to worry about the MRI, I've sent you a PM. smile For anyone else who reads this thread: it's cold and noisy in there. They will give you headphones but you'll be able to hear the machine clunking away. It's important that you have no metal objects on you, they will go through safety questions before and ask about a pacemaker/if you could have metal chips anywhere. The MRI is a giant magnet so they don't want you to have metal (hip replacement is OK though). They will cover your head and face with a metal cage, it won't touch your face but it will be close, it's OK to close your eyes. A scan usually takes 20-30 minutes and it's vital that you stay perfectly still as it can distort the image if not.

Keep resting. I'm sorry about the toothache, that's all you need at the moment. I hope Tuesday goes OK and you get some answers quickly. They usually say go back to your GP in 14 days after a MRI but your GP will contact you quicker then this if she/he needs to see you. If it does show up lesions then you can take the steroids up to 6 weeks after you've become unwell. They do have side effects, like making you spotty or eat like a horse. I did get joint pain when I had the last course but it went away. Remember to eat lots of protein when you're taking these as they need protein to work. They usually give a huge dose over 4 days.

Best wishes & waves at Jux smile
Belle.

Jux Fri 07-Oct-11 19:01:36

(waves back at Belle)

Hey Frankly, good news, not much longer to go.

I had a friend whose brother was a very learned orthodontist; I remember him explaining how your teeth can affect you all over your body. He'd pulled a couple of teeth for his sister as she'd suffered from very bad backache for years, which he said was due to overcrowding. It worked. I've heard the same from other people too.

It is noisy in that thar MRI. My last one, I was asked if I wanted the radio on to which I said yes, as I'd never been asked before. The machine's clunky - some times worse than others - and most of the time I could hardly hear the radio at all, and when I could it was on some ghastly station playing garage or something! They gave me a break half way through (I was having full body scan - takes a while) to ask if I was OK; I positively begged them to turn the radio off. Went back to amusing myself with times tables! It just annoys me that I can't take a book in with me.

Good luck.

ginmakesitallok Fri 07-Oct-11 19:07:20

My Mum was diagnosed with MS over 5 years ago (can't remember exactly when) She's doing really well - she has weakness on one side and numbness, but manages day-to-day life fine. She drives an automatic car and gets tired quickly, but apart from that there are no other outward signs of the illness. It took a while for her to get her meds right - she has anxiety and depression - but now they are OK so is she. When she first got her diagnosis it scared the hell out of all of us, but we've learnt to live with it, and she does so very well indeed.

Hope all goes well for you

ginx

stitchthis Tue 11-Oct-11 07:59:25

I like to think of the MRI noises as an underground industrial electro punk band like nine inch nails for example. I try to pick out a beat. Good luck today frankly. I've pm'd you back.

belledechocchipcookie Tue 11-Oct-11 18:22:52

Hi Frankly, just wondering how it went? I hope you're OK.

MrFranklyShankly Thu 13-Oct-11 12:44:13

Hi ladies, thanks for the good luck wishes, all went okay, thats funny stitch, thats exactly what I was doing, the noise left me feeling a bit aggitated at first and then I just started playing music (in my head!) over the noise of it...but it wasnt as bad as I expected....so just a waiting game again now...at least I know theres going to some kind of outcome soon...just really want soemthing to make me feel at ease again, this feeling is (excuse the pun) getting on my nerves so much......Hi Ginmakesitallok, thanks for your post, its good to read positive stuff like this, doesnt make it as scary knowing that other people are copin and living okay with it....sometimes I have such bad panic attacks just thinking of what's ahead of me, or not knowing whats ahead of me, what if its something sooooo terrible I wont be able to face it.....but like you say belle, one day at a time ;-)

Will keep you posted on how I'm getting on, thanks for the support on the thread it really is a good outlet for me...as well as getting great info from ye all.

MrF

belledechocchipcookie Thu 13-Oct-11 14:12:05

Have you tried meditating? smile I really do hope you get some answers soon. xx

Jux Thu 13-Oct-11 14:43:56

Glad it went OK. I think if you know it's going to be noisy then it gets very noisy in your imagination and you gird your loins and steel yourself against it, and then the reality is less bad when you have to face it.

Try yoga, if you've got a class near you. I've heard it's quite good for ms, though I do T'ai Chi as we have a special ms class just within (my) walking distance. It's fun as we do a bit and then have a sit-down, rest and a gossip. However, we started two years ago, and those of us who go regularly can do so much more now than when we started, and one woman was telling us this very week that she had gone upstairs without her sticks for the first time in 15 years, and had spent the next hour or so up there without them. That's not down to medication, it really isn't.

stitchthis Thu 13-Oct-11 20:28:11

Another yoga vote. I've just started it and love it smile

MrFranklyShankly Wed 19-Oct-11 10:08:30

Hi Ladies, well I've been off 'resting' and I have to say I find a huge difference.....I'm just chilling out, reading, going for a little walk, spending time with the kids (not getting annoyed with them over every little thing!) and it really is helping.......I don't know what this is...I still have the odd sensations in my whole body, my balance is fine again just waiting to get some results now and I'm not even thinking about that, whatever is there should show up and I'll deal with it when it shows up, that's all I can do........and I have booked myself into a yoga class this evening, didn't even realize but there's one in my local community center just down the road from me......so looking forward to that now, have another reflexology session tomorrow morning as well, it really does seem to be just looking after yourself a bit better and not letting stress get to you.........thanks again for the advice......I'm feeling a lot better this week and much more calm about everything........;-)

Jux Wed 19-Oct-11 12:07:34

That sounds really good, Frankly. So glad you're having a good time (envy envy envy, but I'm not doing the emoticons as it's tongue in cheek). Anyway, make sure your diet's good too, lots of green leafy veg.

Fingers crossed about the results.

belledechocchipcookie Wed 19-Oct-11 12:14:18

That all sounds really good Fankly smile Rest is great, it makes so much of a difference. You don't quite realise how crazy your life is until you take a step back and look at all the things you're going through.

ChairOfTheBored Tue 25-Oct-11 19:29:29

Lurking here. My DH was diagnosed with MS earlier this year. So far we have been massively blessed that he has been 'symptom' free since, but it's the uncertainty I find the most difficult to live with.

It could flare up any time, or not at all for years (obviously the better option). It has really made us reevaluate though - we're much better at just taking time for things, and re-focusing on the things that actually matter.

I also make him take more vitamin D pills and omega oils than one might consider rational...

belledechocchipcookie Tue 25-Oct-11 23:16:38

Hi Chair. I think the uncertainty is the worst part of the disease, I'd love to know what the future holds. I try not to think about it and get on with making the most of my life.

I wish you and your DH all the best. smile

Jux Wed 26-Oct-11 00:10:12

Absolutely right, everyone. Uncertainty is really hard to live with, adn you do have to take one day at a time; but there are assumptions you can make once you become more familiar with the pattern of the condition.

Because fatigue dicates my life quite heavily nowadays, I have to anticipate events so I don't get overtired. If I know I've got a lot of people coming to lunch for instance, then I get as much rest as I can in the days before it. Same with big social events.

DH is pretty good too. He hates it when I get overtired so he's become much more aware of what is likely to wear me out and steps in quite forcefully. He can be brilliant, and it makes so much difference.

ChairOfTheBored Wed 26-Oct-11 10:19:39

Thanks belle. He has coped with it better than I have I think. Will keep lurking here though - is nice to know there's a place for support. To be honest, while I found the MS Society website really useful, the forums scared the bejesus out of me.

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