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Is MS Life Limiting Illness?(100 Posts)
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.......
I have been in your position, I went to a neurologist and after a brain and spinal ct scan he ruled it out. I do understand how dreadful this is for you, for goodness sakes do not google it, it doesn't really help you (or so i found, it just scared me more and more)
I have to say I do still have a lot of symptoms but it could be a lot of other things and honestly I just cannot get into it, I am ignoring it.
My DH was terrified too and I do understand about being scared to say it out loud. I did tell a close friend before I knew the test result and the shock on her face was terrible and she gave me a hug (and she is not a hug person)
I do not understand why it would take a year to find out definitively because the neuro I saw was looking for specific things in my brain and spinal scan and they were not there. Perhaps you need to ask to be referred to a neurologist immediately, if this is suspected then it should be the first port of call.
I am dreadfully sorry you have the threat of this diagnoses hanging over you but I know when I posted here that there are a few Mummies on here with MS and they were very positive and supportive.
Hi, I'm posting in the hope that I can be supportive rather than that I have any first hand experience of this. I work as a physio, and whilst neuro is no where near my field of expertise I can tell you that Neurology is hugely complex and MS is one of the better known of MANY, MANY conditions which can have similar symptoms in the early stages. Some, unfortunately, are not things that you would wish on your worst enemy. Others can be treated and are not necessarily life limiting.
Even prior to diagnosis I would hassle the GP for a referral to a specialist neuro physio for 2 reasons.
1. Your symptoms (poor balance especially) can be treated and basic exercises now can slow the progression of disability if this is a degenerative neurological disease WHICH IT MAY NOT BE.
2. Provision of such services is variable and depending on where you are in the country the waiting list for physio could be LONG. Getting on the list as early as possible is always beneficial.
On a personal note, my DP was diagnosed with RA nearly two years ago and that was hard for both of us. I was really scared as despite working in a caring profession, I'm certain I'd be a crap carer at home! It may be difficult to address it at this stage of uncertainty but the odd joke of "Are you making dinner? Probably best if you do- you'll need the practice for when I can't do it anymore!" can lighten the mood enough for discussion of the potential without it having to be a dreadful conversation. The "will you come and wipe my bum for me" joke also works but only if toilet humour amuses you both!
All the best, please PM if I can be of any further assistance.
Thanks for the replies and advice...its actually a relief just to have it unloaded and be 'talking' to someone about it...and Pinky, I did that very thing you told me not to, goggled it! It was actually how it brought MS to my attention, I'd heard of it before, but you know you hear of people who have MS, it sounds terrible and scary but I never gave it much thought.....so after a few weeks of the numbness/unbalanced stuff I goggled just that, and every time it brought up MS so it was through that I started to find out a bit more about it........but some of it was so scary I stopped looking anything else up about it and made the appointment with my GP...our health service is, how to I put it, SLOW, everything is by referral, and if your a public patient then the waiting list for anything is forever, both my husband and myself work but we don't earn enough to go private for everything.....so after talking to my GP, he took bloods all that malarky, referred me to the hospital for an MRI scan, which I was told has at least a 2 to 3 month waiting list and will be waiting to see a Neurologist which takes up to 6 months and probably a bit longer....so that's probably where he's getting the year figure from....its like you say having it hanging over me is wrecking my head to say the least, last week I wasn't too bad as the 'symtons' weren't too bad so I forgot about it temporarily, but this week its back again in full force...have you had the all clear Pinky, and do you still have the symtons of it?? Dogsandcats I'm so sorry to hear about your DP, I think your right, you need to approach it with some humor otherwise the future would indeed just look very bleak...but it is that very thought, of having DH care for me at home, if it is something that will leave me debilitated......I dont know if he'd be able to do that, or if I'd want him to, but I suppose you have to cross that bridge if and when it comes to it....
And the other thing is I do know there could be so many other explanations, some of which I don't even want to think about....and one's that are more easily treated.....hopefully I wont have to wait too long for my referrals to come up so that I can get on with things whatever the outcome.......as you have said the earlier I can get it diagnosed the quicker it can hopefully be treated and I can get on with life again.....Your replies have definitely lifted my mood......thank you for taking the time.....I will post back again when I get some answers, good luck to you both.
Hi frankly. Im so sorry you are going thru this. The waiting is hell I know. I've got Parkinsons but was having similar tests etc. Hang on in there. Try to get referred to the clinical psychologists too as they help with the emotional trauma. You are not alone.
Agree w pinky. Stay away from google!!!
Thanks stitchthis, yeah the waiting is hell, its driving me around the twist at the minute, just want a quick yes or no, its this or its not this.....yeah I've stopped tormenting myself with google, its hard enough trying to sleep at night without adding another 10 possibilities to what it might be! Sorry to hear you've got Parkinson's, how are you dealing with it? How does it affect you? I'm having such a bad few days of it, had to turn around on the way to work this morning and come home, my balance is so bad, my head is spinning and my arms have so little feeling in them, so didn't think it was such a good thing to be driving, Im back with the GP tomorrow to see if there ANY news on ANYTHING for me.......feel really angry today sorry for the ranting, just want an answer now....and to be able to get on with things like normal......I'm sure you know all about this stitchthis, did it take long for you to get your diagnosis? How is your condition being treated?
Thanks again for the support
Frankly, I know exactly what you are going through, as have just recently (last month!) had a diagnosis of MS. I didn't have to wait as long as you for referrals but it still added up to months in total for referral, scan, results etc, and the waiting is crap. Also, because the most common form of MS is the relapsing remitting form, people aren't diagnosed with it until they've had two separate episodes of neurological symptoms (which I had had, so I think that speeded up my diagnosis - I'd had symptoms previously that I hadn't realise were connected to my current symptoms).
I don't want to sound negative, but getting an answer, although it will help, will not necessarily give you any certainty. If it is MS, you will have to learn to live with the fact that you still won't know what your outcome will be, although it is reassuring to know that the treatments are improving a lot, and there seems to be quite a lot of research going on in this field. If it isn't MS (which i hope is true) then you will need to try to find answers as to what it is. You may have something simple like a vitamin deficiency (pernicious anaemia can give all sorts of horrible symptoms).
Stress is very bad for neurological symptoms, so try your hardest to stay calm. For me, that usually means preparing for the worst and working out how I will deal with it, and proving to myself that I will be able to handle it. For you, it might be distracting yourself, or giving yourself permission to take things easy to help you feel better.
Also, don't forget that you are allowed to chase things up - keep phoning your GP to find out what it happening. Phone the hospital to chase up your referral - it can sometimes mean they get onto making an appointment that they hadn't got around to yet. And re results, chase them too - it can really speed things up. Also, you sometimes get lucky with things like scans ad get cancellations (I did. One week from seeing neurologist to getting scan, instead of 6 weeks, as I was able to take an appointment at very short notice).
Keeping my fingers crossed for you. x
Hi Huckabees, sorry to hear about your diagnosis of MS. I know its very strange when you start to pick out things that have been happening to you, maybe as far back as a year ago with no notion that it could be connected to something like MS, If I am totally honest with myself, some of the symthons go back further than a year, just strange feelings that I haven't been able to explain and now there a constant....I've just come back from seeing my GP, and he was more than helpful, got onto the hospital about my referral for a scan and they told him shouldn't be more than 2 to 3 weeks now, which for the health service where I live is quiet good!!! Stress is the big thing with me, I am sooooooo stressed out sometimes, with the children, with work, a few members of my family were sick a few months ago, brother has skin cancer and my mum was very ill so I was really stressing about everything and thats when I noticed my own symthons getting worse and worse.......yesterday was one of the worst days I've had, today isn't too bad.....but yeah I'm going to have to try and get a handle on the stress.....its really good to know there's someone here to talk to as well, my poor DH just doesn't know what to say to me sometimes......but I'm trying not to conclude on things too much as like you've said there are other things that could be causing this, so I'll just have to play it one step at a time.....are you on medication for the MS now? I'm still a bit in the dark about it all, sometimes I think if I don't know anything about it, it might not happen (not a very grown up attitude I know but sometimes I helps!!!)
Its good to talk to you huckabees, thanks for the advice and support, its great to be able to come here and let it out a bit.
I have MS, I was diagnosed a year and a half ago. The MS web site has lots of information and is really good for support. I was relieved to have a diagnosis, I know it sounds nuts but I had been feeling so unwell for so long and they couldn't find anything wrong so I started to think I was making it up. There's three different types: relapsive-remissive (it comes and goes, does tend to get better), progressive (it comes and doesn't get better) and secondary progressive (sometimes relapsive-remissive turns into progressive). The medications that they have at the moment have had good results on the trials. I found accupuncture very helpful though but I'm not sure if this would apply for everyone. I gave up work last year as this was the most stressful part of my life and, thankfully, I've been in remission since then. I'm also not taking any medication. I do have a blog on here which talks about my diagnosis. The accupuncture has really helped with the fatigue and the burning sensations, it can be hard to find one who knows what they are doing though.
Ask for a neurology referal, from then they should organise a MRI. I had a lumbar puncture which detected high levels of some sort of chemical that shows up with MS which confirmed a problem. It was only properly diagnosed last year when I relapsed so it can take a long time to be diagnosed.
Frankly, it does sound like you've had a very difficult time lately. I find that stress is a HUGE factor in how I am feeling, but luckily I only work part-time and my DS is at school, so I have given myself permission to chill out more and not try to keep all the plates spinning all the time. (I am bad at saying no to things, but that is going to change).
I am not on treatment yet, although my neurologist wants me to start interferon, which I am going to do and see how it goes. There is also a ton of stuff out there that's more complementary or alternative health based, that lots of people have found helpful. I have decided to try the low-fat diet (Swank diet) as i figure it's not going to do me any harm, but some people advocate cutting out wheat and dairy too (I would find this too difficult so haven't gone down that route). Personally, I find all the different theories of what helps a bit confusing, as there are so many, and they are a bit contradictory sometimes, but it kind of depends on your philosophy on these things, and how good you are at disentangling it all. Just don't get overwhelmed.
My neurologist recommended taking a vitamin D supplement as there is a suspected link with MS, and as I'm in Scotland, it's likely that during winter, I won't get enough vitD, even if I was outside all day long, as the sun is too low in the sky.
I'll let you know how I get on with the drugs...
Hi Belle sorry to hear about your diagnosis of MS too, I'm really happy to hear about the alternative therapies as I'm a big believer in a lot of things like that, not a big fan of medication, have a fear of all the side effects they bring, although I know if they can prescribe something to slow things down or make this feeling stop or go away then I'll be more than willing to try... a few years ago when I was expecting my 2nd child I was attending a reflexologist and found her great for solving lots of pregnancy related problems, and have actually been thinking of going back to her for a few sessions since I've started to feel like this to see if it will help, I'm sure it would even help with de-stressing......I've also been talking over with my husband maybe reducing my hours at work and working part-time, as I have quiet a long journey to and from work everyday and that in itself is stressful, along with all the other plates spinning like you rightly put it huckabees, that's exactly how I feel at the moment, trying to keep everything going and its just wearing me down completely. Will check out the vitD, I'm in Ireland huckabees so our weather system is something similar, especially if its going to be another long winter this year again! Hope the meds work for you huckabees, keep me posted.
I completely understand Belle what you mean when you say you were relieved to get your diagnosis, I was even relieved just to have the GP agree that he felt I was showing symptoms of MS, as I thought he'd think I was making it up or it was all in my mind.....was just relieved to be taken seriously about it.... I'm glad I posted here now....and I will check out your blog as well Belle, thanks.
I can recommend a good book Frankly, but don't want to jump the gun, given that you don't know whether you have MS yet, but let me know if you are interested.
There are disability benefits that you can claim, Disability Living Allowance is a nightmare to get though. I was told that, as long as I could walk, I was not entitled to the mobility component. It's irrelevant about the pins and needles/pain DLA at the lower rate is £19.50 a week or something similar. It sounds as though your life is shit at the moment. Can you take some time for you? Reflexology sounds like a good idea.
Hello other people
Message withdrawn at poster's request.
Agree re stress. It's a definate factor and one that can be (relatively) easily managed. Agree re cutting your commute and/or work if you can. I've moved offices but kept the hours as I take the view I'm not giving up on my career quite yet. And there's the mortgage
Complementary therapies are great too but the meds are also there to help. With my PD I'm trying a combo. But that's me. Everyone is different.
I'd try to make sure DH had someone to talk to. The uncertainty is awful for OHs too and you both need support.
I have a blog here and it's been a brilliant venting tool. I get it out by writing about my feelings - boring for everyone else but I find it v helpful. Maybe try the same? Or a diary? Keep us posted. We r here.
I was diagnosed with MS in 2008. My neurologist recommended I start on interferon, but before it was prescribed I discovered I was pregnant. My daughter is, of course, a wonder. I have had the greatest difficulty with dealing with the diagnosis, especially when the symptoms flare up, but I haven't had a relapse since diagnosis - thought I was getting worse earlier this year but it turned out to be migraines exacerbating the symptoms.
I just about hold down a four-day-a-week job and very much hope to conceive again. MS can be ghastly, but the other posters on here are absolutely right to urge you not to Google too much. I did that earlier this year and persuaded my GP to give me an entirely unnecessary (and dreadful) course of steroids because I thought I was relapsing. Had I seen a neurologist I could have avoided that.
I too recommend vitamin D (and I give it to my daughter too, as MS has a hereditary element). But I believe a cure will be found before she reaches 20.
Your family and friends are a wonderful ally at times like this. Do ask them to help. I wish you all the best.
Hi again folks, Hi Elpis and Riveninabingle. I'm relieved to be honest to hear your stories, its just reassuring to know that MS isnt life limiting...I have started taking the Vit D (even though I know I have no diagnosis yet and dont want to be jumping the gun)actually Elpis thats a good idea to give it to your DD, I have 2 DD's and that was something that crossed my mind too, could they possibly end up inheriting something like this.....again thats if this is MS. I did tell some of my family over the w/end and it has been a huge relief and they were very understanding, I was reluctant to tell my mum as I thought she's been through enough in the last while what with my brother and her own health, but she was great and promised she wouldnt be worrying herself until we have a definite answer to whats causing this...my dad's ever the optimist and said it's most likely a trapped nerve in my neck, I really hope so! and I've booked myself some 'me time' for this w/end! Going to have some reflexology and a massage with a voucher I got for my birthday recently sooo hopefully that will help, well it'll take my mind off it for a while....I was fine over the w/end, just extremely tired, totally wiped out tired, couldnt even keep my eyes open at points.....but no numbness and th balance wasnt too bad, but my god today has been hard work, I lost my balance and hit my head this morning of the top of the kitchen counter, I have now started to see a blue flashing light to my right eye?? Does this sound familiar??? I've been told that I could possibly have my MRI scan sometime this week if there's a cancellation so that would be something.
thanks huckabees for the offer of book recommendation, I might wait and see whats to come, like you said dont want to be jumping the gun yet...feeling like crap today I have to say......and I've found out I'm going to be changing office at my work too stitcthis, and like you I really like my job and dont want to have to give it up, but I do think reducing my hours, even just for my DDs sake would be good, but as for giving up completely thats out of the question with the mortgage bills etc.
Thanks again for all the advice and support, I find when I type all of this down here it clears my head which most of the time is in a fog!
Has your GP given you any steroids Frankly??
No Belle, the GP hasn't given me anything, should he have? Is there anything I can be given while I'm waiting to be diagnoised?? I'd take anything just to get rid of this awful feeling for a while....
The chance of a child inheriting their parent's MS is 1 in 40. Not worth fretting about, especially when a cure will be found by the time they grow up, I'm sure.
I doubt your GP will give you steroids unless they know you have MS. Are you taking some time off work? Get as much help as you can from relatives and friends, and take care.
Have sent you a DM
Thanks Belle for that, I havent taken any time of work eplis, well two days last week as i just couldnt drive, even walking was impossible I was in such a state...think I'll go back to my GP again see if I can get a move on with things, still hoping for this cancellation for my MRI, although I know it may not come up...a few days off might be in order although I'm taking over a new post at work next week so probably not the best time to be off...I was fine this morning, and then things started to go down hill again about an hour ago, really tired now and the weakness is starting in my arms and wrist as well as being totally off balance....is that normal (if you know what I mean) can the symtoms come and go like that??? My head is truely wrecked.....and I still have to drive home from work
You really do need to take some time off Frankly, it's not safe for you to drive at the moment. See your GP, get them to sign you off and sort out the MRI. Symptoms do come and go, you need to take time off though and rest.
Definitely take some time off. I didn't and I screwed up an important interview as a direct result from which my career has never recovered. Staying at work can be the worst thing to do.
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
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!
Hi there Belle, how're you, and your lovely boy?
Hope you're OK Op.
I'll send you a DM Jux
Hi Frankly, how are you today? Have you nagged your doctor yet ? 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?
Hi Frankly, I hope you're OK.
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??
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
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.
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!!
Hi Frankly. That's great news. Try not to worry about the MRI, I've sent you a PM. 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
(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.
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
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.
Hi Frankly, just wondering how it went? I hope you're OK.
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.
Have you tried meditating? I really do hope you get some answers soon. xx
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.
Another yoga vote. I've just started it and love it
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........;-)
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.
That all sounds really good Fankly 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.
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...
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.
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.
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.
I've not been on the forums. My last hospital appointment was very scary though. I'd just got out of a relapse and was able to see properly. In the waiting room were a lot of people in wheelchairs, unable to do anything for themselves. It made me look at my life properly. I left my job and started writing, I've been in remission ever since and barely have any symptoms. I know the MS society have branches all over the place, there's one here. I may venture in at some point. It is hard, it helps to go one day at a time.
You can get medication for the fatigue Jux, amantadine or provigil. They are anphetamine based. I did try amantadine, it did work but gave me crazy dreams.
I took amantidine years ago, but got onto the top dose quickly and needed something stronger. My consultant at the time was a vile man who wouldn't even look at me, let alone talk to me. He addressed all his remarks and questions to dh (who was being so far off brilliant at the time that we were in line for divorce). In the end, I stopped taking dh with me, so the bastard consultant didn't speak to me at all!!!! I never went back. We moved a year or so later and my consultant here is lovely.
I take provigil now, but have an under active thyroid too, so it all gets mixed up and we are messing about with doses between provigil and thyroxin until we get the mixture right! It'll be fine, just a little more patience required.
Don't let that worry you, Frankly or Chair. My first attack was years ago and I've only got like this in the last few - age catching up with me! As I said earlier, I've done tons of stuff despite ms, even since that first attack (though looking back I think I had my real first attacks in my teens, which means that I've done even more wild and wonderful things with ms running in the background).
God Jux! That's terrible treatment.
He was an exception, belle. Most consultants seem to be really nice people.
What annoyed me most in the end was that I wrote to the hospital telling htem I wasn't going to see him again and exactly why and detailed the whole of my 10 minute audience with him, but they kept sending me letters giving me further appts and then more letters telling me I'd missed them and giving me another etc etc etc. I must have missed 5 appointments at least in the two years following.
Just to reassure people: neurologists are not usually like that!
Happy Halloween!! Hi Chair, glad you posted, sorry to hear about your DH, and your so right, even though I haven't had any diagnosis yet the uncertainty of what might be ahead of me is maybe worse than what I will find out....the things I have conjured up in my head are probably much worse than what this will probably turn out to be.........and I totally agree with you,I went to the MS society website, just to check out if anyone else was going through the same as me and it scared the absolute life out of me....so now I just stick to finding out little bits at a time! I hope everything turns out okay for your and your DH and wish you all the best.....and do keep lurking as you put it! Sometimes its just good to know there is somewhere you can go for a a bit of anonymous support! Can I ask you about your DH symptoms? What made him look into it? if you don't mind me asking you, you can PM me if that's okay?
Well the saga continues, I've found out that my MRI hasn't produce enough results, apparently it was very distorted (could that have been my fault, I kept as still as I could?) so it looks like I'm going to have to go through it again? Very pee'd off to say the least.......the old legs arent great this weather, not doing what I'd like them to do, and sooooooooooooooooooooooooo stiff, feel like I'm dredging through mud, but things have settled down a bit, sleeping better at night (a bit too well, DH and kids have to bang drums to get me wakend) and the buzzing is still there, just getting better at ignoring it.......just really want to get an answer now.......would be a relief to hear what this is that is invading my body.....anyway....rant over......hope everyone is having a nice Halloween........
Sorry guys, didnt even see page 3 until now LOL, was still on page 2 when I replied! God Jux that is awful treatment..........on my first pregnancy with DD my consultant was a bit like that.......he wouldn't even look at me, spoke about me and my 'unborn fetus' like we were just a stats report, git......so there's always one somewhere, just a pity you had to get him......I hear the neuro that I will (eventually!) be seeing is lovely......Yeah Belle, best keeping away from the forums.....I've met 3 lovely ladies recently too that have MS, one has had it now for 15years and she said its only really in the last 2 years that she's been needing a walking cane to walk with so things like that give you hope, my gp keeps telling me too that the medicine has come on leaps and bounds for MS so there is so much hope (or so I keep telling myself in the interval of knowing whats going on in this crazy body of mine!)
What a *&^&. Yes, that's exactly how my consultant was. Evil gits aren't they?
If you are diagnosed beware of 'cures'. When I was dx, everyone popped out of the woodwork talking about this or that brilliant cure they knew of; most of which were vastly expensive, required many sessions and huge financial outlay. Do not be beguiled by any of it.
Even my husband, only a couple of years ago, wanted me to go off somewhere to get some goat serum injected into me The latest thing is a cure which will cost £8K but is guaranteed to work. 100% success rate. You have to question that sort of thing.
I want to tell you about my friend who has ms.
She was dx in her late teens/early 20s. She was a science teacher in secondary school (now retired, not through ill-health, but normal age-thing before it was put up).
She and her husband are gad-abouts. She's never HERE!!!!! They're always off somewhere in their big motorhome. This summer they went all round Europe for 6weeks. Last year it was America.
They've had 4 children and she spends a lot of time jetting about between here and 4 different areas in the UK helping with the grand kids. the grand kids often come to stay, some are only toddlers. She was saying last week that one of them (3 yo) is a bit heavy for her to carry now.....
She and her dh go out 3 evenings a week, to dinner, to socials blah blah blah. They entertain, barbecues, parties, dinner.
Pretty normal life. Like a lot of people in their 60s who've been able to retire on good pensions.
Yet, she has had to use sticks for walking most of her life. Now, if she goes out, she has to use a motorised chair. So she's not entirely normal, and has been affected by ms, but her attitude, and also importantly her dh's, is Do It.
I know another woman whose attitude is Don't Do It. Her husband is the same. He is embarrassed to be seen out with her, so he isn't. She goes almost nowhere. He even goes on holiday without her.
How limiting you allow ill-health to be is not just determined by the condition you have, but by your attitude to life.
Hi ladies, how are you all keeping. Well had my 2nd MRI at the start of the week, was pretty much the same as the first, noisey, cold, at one point I felt like shouting I'm a celebrity get me out of here!!! but got through it and getting results next week, have my appointment to see the consultant in the hospital to go over the results of the scan....so at last I'm getting somewhere nearer finding out whats going on...feeling a bit nervous now, do I really want to know really, I know the sooner I find out the sooner I can do something about it....if theres anything to do something about...so I'm going to adopt your attitude Jux and belle, one day at a time and we'll see what happens, doesnt mean life has to stop, it might just be a bit different....will let you know how I get on, thanks for the words of support, they really are appreciated girls.
Good luck Frankly. I felt overwhelming relief when I finally got a dx; at last, all those people who had been treating me as a lazy-good-for-nothing waster were wrong. Well, that was one thing but definitely secondary to the fact that I had spent so long just not knowing what the hell was wrong with me, and now I did!
My gp told me her best mate had felt exactly the same when she was dx.
I was relieved. I'd felt so unwell for years and kept going back to the GP with various symptoms that I'd started to feel as though I was a hypochondriac. I really feel for people who have ME/CFS, they medics like to see evidence of an illness before they take the patients seriously. It's depressing when you're feeling so crap and you don't know why.
All my life I'd been a mass of minor ailments; most of the time I could just ignore them or work around them. I remember standing at the back in class aged about 15 bent from the hip over my desk because my knees had locked and I couldn't sit!
Someone told me today that there's a blood test for ME now.
Hello mums netters I just picked up this thread . I'm fairly new to this but was looking for other parents with m. S. I've been on the road with this disease 8 years now, and am going for my second MRI this week. Absolutely terrified as I had a panic attack last time. It certainly makes for a different life than you thought you would have but I guess it's what you make it. My kids keep me from going but I was wondering if anyone has told their children or not. Mine are 7 and 4. We don't talk to them about it but I'm wondering wether we will when they are old enough to understand.
Hope it's ok for me to come back into the thread.
Frankly, good luck with the consultant. i hope your results clarify things for you. I would second what the others have said about a clear diagnosis being a good thing, even if it's bad news, because then you know what you're dealing with. For me, that's a positive thing, because then I can tackle it head on. I have been working on the 'Do it' basis, like Jux's friend, and so far, have managed ok.
My diagnosis came this summer, and I've now started on beta-interferon treatment, which is a bit of a bind, and I probably feel a bit worse at the moment, although prior to starting it my symptoms had improved from the horrible dizziness and weaknes I had over the summer, so I'm putting it down to my body adapting to the drug.
Jelly, my DS is 9, and I've told him in simple terms what I've got, but tried to reassure him that things won't change all that much. He seems happy with things and hasn't really asked too many questionsa, although he did ask if I would die, which is apparently the first thing that kids usually say (the second being, 'will i get it?'). I got a great little booklet from the hospital for him to read produced by the MS Trust - might be worth asking your nurse for a copy. He has repeated some of the things he's read, like the fact that I will sometimes feel better than at other times etc so he seems to have got a bit of a grasp of things.
My son's 12, the first thing he asked was would I die? I spent time explaining what it was and how the TV programmes always portrayed it as being worse then it really is because they dramatise things a lot. I have relapsing remissive so I explained that it goes away and comes back. I've told a few members of my family, not my mother though as she'll panic and won't really understand that it's actually OK at the moment. I had to take ds with me to the hospital when I was unwell last year, he kept the nurses amused
Hi again guys, have to say this feels like the longest week ever.......getting results on Tuesday......trying not to build myself up too much over it, as I know they could turn to me and tell me that they need to do more tests, which in a bizarre way would be worse than actually a clear answer as to what it is....I just cant take much more waiting for tests and results.......nice to hear from you again huckabees, and hi to Jellymaker, so sorry to hear you have this awful thing, my eyes have really been opened to all of this over the last few months, before this I really hadn't a clue to what MS was.....such was my ignorance....and like that Jelly I have been thinking what do I tell my children, mine are around the same age as your, 3 & 6, my 6 year old is fairly clued in to whats going on around her, and has obviously heard me and my Dh talking about things, and has already asked me if I'm sick and will I be okay.....I did see on the MS Society website a booklet how to explain to your children......sounds like you're Ds is a little star Belle, My girls are great just for taking my mind of stuff, well when we're not fighting about tidying up that is!!!
anyway, I'll let ye know what my outcome is on Tuesday, if there is one, thanks again everyone for the words of support, they really are appreciated.
PS: Huckabees I haven't forgotten about that book, might get you to recommend it to me now if you don't mind. Thanks
Hi Frankly - keep your chin up. I remember waiting for my results (the consultant went off on holiday after my scan, so it seemed like forever). It was really tough, but much better once I knew for sure, even though it was a positive diagnosis.
Here is the book: remember not to get too bogged down with the details - there are LOTS, and many conflict with each other, but the author is said to be an inspiration to many people.
Managing Multiple Sclerosis Naturally: A self help guide to living with MS by Judy Graham.
Whatever life throws at you, you can handle it. Remember that you don't really need a lumbar puncture, there's no point in putting yourself through that. Take each day as it comes.
Thanks Huckabees and Belle, trying to remind myself I'm stronger than I think...although at the moment feel like I'm going to have a breakdown just thinking about it.......feel like I'm trying to keep everything together, get on with normal daily living, which is hard when all you want to do is pull the duvet over your head and sleep forever. thanks for the rec on the book huck ;-)
Hi ladies, well got my results from my MRI yesterday, and the good news is they were clear, they said nothing showing up in my brain scan out of the ordinary and the only thing they found on my spinal scan was that I have 2 protruding discs in my neck and my back! So they think this is the root of all my problems........I'm extremely relieved to say the least, they said that they feel I do not need to have a LP done as they don't believe there is anything other than this causing my symptoms so awaiting for a referral to a physio now, still have all my numbness, tingling, weakness, twitching, dizziness and constant vibrating when I'm sitting still (which they tell me is all caused by the nerves being pinched in my neck and back) I just hope this is really the case and they aren't just passing everything off on this one thing.....so now what do ye think? Does this sound likely...........although I'm totally relieved, my anxiety levels were sky high at the w/end with worry so I really want to believe this of course.........but what do ye think??? Hope ye are all keeping well by the way.........and thanks so much once again for all the support
I have no medical expertise, but it sounds reasonable to me. Pinched nerves can certainly do all those things. If they've found nothing in the scan then I would assume there's nothing there, you've had 2 now haven't you? Plenty of opportunity to make sure they see everything.
Congratulations! Chocolate all round!!
Congratulations Frankie - my dear late brother ( I absolutely hasten to add the 'late' was absolutely nothing to do with that ) had a similiar problem in his neck and blood supply was being restricted to his brain etc > passing out > numbness etc. He had to have an op called a spinal laminectomy to correct this and while it was no picnic -he had to lie flat in hospital for a week or so I believe from memory - it was successful. You obviously may not neccesarily have to have this but just pointing out they can usually rectify these skeletal related thingy wotsits type problems (not a techy me I'm afraid ).
The reason l have come onto this thread unfortunately on a more serious note is that my son aged 33 - fit as a flea/non smoker/light social drinker/good diet/ ex county champion cross country runner - has rang me last night with some 'news'. He had a scan on his neck a month or so ago because of numb hands and stiff necks and they have told him apparently they think he has MS. He said they wont no more till January.
I too need a
good kicking slapped wrist - straight onto Google with tears still running down face as just come off phone - but still managed to see enough to picture my lovely son a complete shell in a wheelchair in no time at all.
I am going to see him on Saturday me and DH are staying over nearby - he lives other end of country - and my two little DGDs and l am dreading it. l am just gonna burst into tears and make him feel worse and be no use to anyone - how do l pull myself together - l need someone to tell me he will be alright but l know no-one can . As many of you have said its the 'not knowing' that is unbearable.
Frankly - great news, so to speak. I hope they can get your neck problems under control and it relieves the symptoms. Fingers crossed.
Sudaname, try not to 'react'. Give yourself time to let things sink in, and read back on this thread and you'll see how many people are leading normal or almost normal lives with MS. The thing that is helping me is the knowledge that there is so much good work and research going on regarding MS. I feel optimistic that treatments will improve and that people like me (reasonably well) will be able to keep a good quality of life (look what's happened with conditions like HIV in the last 10 years).
There is not much to be gained from worrying about what the future holds when there's life to live in the present. (I know that sounds a bit glib, but it is important to focus on what is ok rather than what isn't otherwise the 'what-ifs' can really get you down.)
Iheart - thank you so much for your very uplifting post. You are right of course - all any of us have is now - only washing machines and such like have the luxury of a 5 year guarantee - so we need to take each day as it comes. I know l will get past this phase of shock and denial and 'no not my son' and realise he is still my son - the same wonderful person he was yesterday and more importantly he needs me to be strong (if l run round the room screaming as l feel like doing l'll be no use to man or beast! ) I have experience of this - my DGD has CF and people say to me - 'l couldnt cope with that - it would break my heart everytime l looked at her etc etc' - but you know in reality you dont do that. When l see my DGD l dont see a 'tragedy' or a child whose life expectancy is only 29 at best - l just see my beautiful DGD - she is 11 and there is much more to her than Cystic Fibrosis - she is enjoying her life now today and lives a near normal life. Thats not to say l dont have dark moments or wake up in the middle of the night having nightmares where l'm at hr funeral for example but l have accepted in the main that there is nothing l can do to change her situation.
I am struggling and feeling a little sorry for myself atm l suppose but l know l will at some point in the near future have a stern word with myself (that thing l do ) and deal with this in the same way.
Hi again ladies, Thanks Jux for the reassurance, your probably right, I've had 2 MRI's done now and if there was something there it should have shown up, but you know, theres always a bit of doubt in the back of your mind as to 'did they get it right'! So I'll run with the protruding disc now and see how I get on at the physio, see if that makes a difference, I hope it works as this constant vibrating feeling is driving me a bit cracked, especially at night.
Hi Sudaname, so sorry to hear about your son, my heart really goes out to you, as I know exactly what you mean. My parents have been to the end of their wits with worry over me this last few months, waiting for test and results, and the anixety it causes is unbelievable... like huck says focusing on the 'what if's can be soul destroying (I know only too well as I've been to the darkest corners of my own mind this last while with what ifs and its not nice)....and what I have learned from this is that although your son's diagnosis might not be what you all want, he can still have a happy life, just means a bit of a change and a good support from family and friends.....and on the other hand it might not be that at all (Hark at me, if only I would take my own advice, should have seen me on tuesday morn waiting for my results..a total mess) Something my dad said to me a few weeks ago 'whats for you wont pass you' and I thought you what your right, chin up and whatever it is will be okay....I really wish you and your son all the best Sud, let us know how he gets on and theres always support here, the girls on here are fantastic with information and support, I'd have been lost without them all over the last few months.
Cheers Frankly - l will keep everyone informed on here - it really does help anyway because you can scream and shout (metaphorically speaking obviously) and nobody minds or condemns you. Also it is infinitely better than falling to pieces in front of my son - although l dont think its always a bad thing to see how much someone cares about you so l wont be dancing round the room any time soon either iyswim but just like when he was a little boy and he had severe asthma attacks l always used to act calm because he knew if l was panicking it was bad and that wouldnt help his breathing in itself. So l will have to put myself back into that frame of mind l used to adopt then.
Look out for me at the Oscars girls and boys
Yeah, that's exacty it Sud, my dad has been great over the last few months, and right to boot, if my scan is correct! He had been saying all along, its a pinched nerve in your neck or back (if only I'd actually listened to him, would have saved myself a hell of a lot of worry and anxiety!) I would say to him do you really think its nothing serious and he would say nooo, you wait and see it'll be something simple, but he told me on Tuesday after I rang him to tell him my scan was clear, that he was frantic with worry, he actually cried when I rang him, so that's a good sign to me that he was under so much worry about me, but I didn't see that at the time, and it did help knowing I have such a rock in my dad (and mum, although she's like me or am I like her, panic and cant hide it!!!) I really hope everything goes okay for your son Sudaname. Its funny I told a few people at work yesterday about what I've been going through the last few months, and one of them told me her daughter is going through the exact same thing at the moment too! She's had 2 scans as they thought they found something on her first one, so then she had to have a Lumber Puncture, and that was clear so she had to have another scan, and they cant find anything, not even a trapped nerve and she still continues to have the numbness down one side and tingling and dizziness....she said they told her, sometimes neurological things happen and there's just no obvious reason for them, Its something viral, they just hope it resolves itself...
Thank you so much Frankly. I have just come back from visiting my son and he seems absolutely fine physically and mentally . He has told me he has only ever had the numbness in his fingers 'now and again' and absolutely nothing imbetween for weeks/months - no other symptons visual mobility dizziness or anything. Thats good isnt it ??? [desperate] l looked on the MS societys site ( I'm barred by DH from any other site now about MS ) and from what l understand that means if he has got MS then he probably has got the remissive version at least for now anyways. Maybe I'm misunderstanding or seeing what l want to see on there though . I asked him also how sure were they he has MS and he said sure enough to say they think he had it after seeing his MRI results (which l think were of his neck and head) but after reading this thread l can see how it can be misdiagnosed and is in fact a difficult disease to diagnose. So l still have hope they might be mistaken (but obviously not for anything more sinister).
Oh looking things up on the internet is a sure fire way to scare the bayjesus out of yourself! As I well know!! And too after speaking to a few people now, doctors seem to use the words MS a bit too lightly I think, if you mention tingling or numbness at all it seems to be the first route they go down......and although its good they take it serious, it leaves you worrying and panicing for months when it could be something simple... and the other thing is, and I'm only really realising this from talking to the girls here, IF it is MS (and thats a huge IF...might be something really simple, which would be great)Its not the worst, it seems that a bit of a life style change is required, cutting out stress and looking after yourself better, but its something you can live with.....I thought when I was waiting for my scan results, if it is MS it wont be the worse thing I could hear, there are lots of other horrible diseases out there, and unforturnatly lots of people get them....so fingers croosed Sud, your son will be fine and dandy fwink. I have my physio this week, thank the lord, as I spent a hell of a weekend, right leg went totally numb and couldnt walk on it....but it was okay again yesterday morn when I got up, so got the xmas decorations up before I'm hit again with it! The sooner I get this lot put back into place the better!!
Frankly bless you. The one thing my son has in common with you it seems is a really good sense of humour - which life just cant seem to batter out of him (probably comes from having a lunatic for a mother ) - which should stand him in good stead. Another thing is he is the least stressy person l know - so laid back he almost falls over - that bits not from his mother though unfortunately - l am a real stressball - in fact when things are going well I find it a worry having nothing to worry about - as a friend once observed about me .
No offence but I couldnt help but smile at the image of you racing to get your Xmas decs up before your leg went numb again - it just reads so comically - and I laugh with you not at you of course Frankly x
Sud, I would agree with what Frankly says. You have to keep things in perspective - I lost a friend recently from a brain tumour, and whenever I start to feel sorry for myself, I think of her and her family and realise that life is good. It sounds like your son is doing fine, and I would say that you should stay away form the MS society website, as I think it focuses a lot on more extremem cases and can be quite depressing. It does sound as if your son's condition is at the milder end of the spectrum, and I know (only too well) that things can change, but you have to try not to focus on that.
Frankly, sorry your symptoms are so bad - hope the physio gets things working again.
Thank you IHeart - yes you and Frankly of course are absolutely right and you have to take life like that - because as I have previously said - only washing machines and tumble dryers get 5 year guarantees - us mere mortals are at the mercy of fate on a day to day basis as far as our health and well being is concerned without any guarantees at all.
In fact the night l got the 'news' from my son l was in bits obviously and l said to my DH (he is my sons stepdad btw only met him as an adult but is very fond of him) just before we put the lights out - ' you know DH l feel like this couldnt be any worse and this is terrible and 'why us ?' etc etc but out there tonight there will be some poor mums and dads going to bed whose son has been killed in a car crash or has been told they have a terminal illness and l bet they would trade places with me right now '.
I have held that thought ever since - we're not even on the same planet of how some people will be feeling right now - we still have life and hope right now and an albeit unknown future - but isnt that all any of us have ?
Ah sorry Frankly me too hope the physio gets you sorted. Sorry about my little joke about your race to get the decs up. I just got this really funny visual of you - your posts reads so full of humour and upbeat especially since you got told the 'good' news.(well you know what l mean - not 'good' but better).
Ohh your grand Sud, its good to laugh! I'm only too happy to provide the visuals if it helps!!! And you would be right I was racing about while the leg was in a good mood!! the leg has actually been grand since Saturday, don't know whats going on with it....have to keep the mind from wandering over what else it could be, or I'll drive myself cracked (again!) so fingers crossed the physio is the cure! Sorry to hear about your friend Huck, i don't know is it because you get older you have to face more of this kind of thing or what but it seems to be so common now to hear of people having awful things or young women dying and leaving small families, it really does put things into perspective doesn't it....Keep us updated on your son Sud, you know where to come for a bit of cheering up and a chat, that always helps when the going gets tough.
Hope everyone else is doing well
ROFL at Franklys leg being in a good mood - priceless. Bless you Frankly and thank you again - l will keep you posted. Glad to hear your DH didnt come home to find you dangling from the attic by one leg and all tangled up in the tinsel .
Oh Lord. DH's arm has started playing up... after eyar of being symptom free.
Brings it all back - and I don't want it to...
Hi, just reading this makes me relive the last year of my life. I was diagnosed with MS in July after 6 months of numb and weak arms, legs and hands. Many tests followed but had to chase them up all the time. My GP was very polite and patient with my constant polite, but slightly neurotic harassment.
MRI scans, lumbar puncture, blood tests for every disease unimaginable. Everything else was ruled out. At the time I thought the worst, which was not MS, so when diagnosis finally came through, I felt relieved,(wierd!). I knew I would have to slow down a bit, but realised with ideas and advice from others, (also on Mumsnet), I could continue to enjoy my life with my family. My right hand is still numb and cooking is a prob.
I think my priorites have changed, accepting the good things and trying to live with the bad is now the norm. I found that I talked to anyone who would listen, mums in the playground,for instance, and discovered a 'dad' with MS, whom I now share symtoms with and giggle at our sometimes awkward gait that makes us look like we've been to the pub! I have also been included in mums nights out that I never was before and because most of them know that I am resticted in what I can do, they make allowances for me. Kids also invited to lots more playdates.
I hope this helps. I don't know if it is what you want to read, but hopefully it will make you feel that you are not alone and there are people out there who can share your worries.
Hi guys, how are ye all doing??? Hope you are good. Havent been on in ages, have been trying to get myself out of a bit of a depressive stage recently.....things are still ongoing....although my MRI brian and spine was clear....still having symptoms.....like you georgilly have been imaginging all sorts of stuff, things way worse than MS if I'm honest.....so just before xmas declined into a depressive state and they put me on anti depressants.....finally have my appointment with a neurologist which isnt until September (and thats private!) so not in the greatest of places at the mo....had a few really good weeks just after xmas, but things started up again last week, the numbness in my right arm and right leg (although my MRI scan has pointed out a protruding disc in my neck, which they think could explain the arm being numb......only discovered from my gp after he finally read the scan that I have also a tear in my thorasic spine, which is quite painfull I also have a disc out in my lower back, whcih I think explains the numbness in the leg, my physio isnt in agreement as she seems to think its not a bad enough protrusing to cause the kind of numbness I'm experiencing??? so really dont know what to think, head is really fried) The thing is I have a lot of numbness on my face, around my eyes and this is what they cant explain sooooooo back to the drawing board, which is getting bigger by the day......I also am now having a bit of difficulity swallowing, have this since xmas, which is another thing they cant explain.....so feel like I'm back to square one with it all again....not in a good place again with it all......I think Georgilly I would be relived at this point to get a diagnosis of MS as it gives much more hope than the other dreadful things going through my mind...so I understand what you mean.......anyway hope you are all keeping well.....you too Stitchthis, hope your doing good.....
Thanks for letting me rant again, probably should have been on ages ago, it always helps to have a little rant.....poor DH dont want to burden him with too much of it as I know he's very worried.
September seems a long time to wait, and that is privately! Have you gone back to your GP? At times I think my GP thought that I was being neurotic, but I perservered going back to him. I was always polite but obviously worried. The uncertainty of MS is hard enough to bear, but no diagnosis to explain your symptoms must be harsh. I really understand how you feel, as this time last year I would go to sleep not knowing if I would wake. (perhaps this isn't helping...). What I am saying is that let your feelings out, I mean in words, DH would rather know how you are feeling than not. This is good way of sharing your feelings. Keep persevering. There has to be an answer.xxx
I'm fairly new to mumsnet but stumbled across this thread just now, I was diagnosed with MS about 2 months ago and am currently waiting for funding to come through to start Copaxone.
I am a mum of two boys (age 6 and 8) and struggling a little with the diagnosis as really want to be rushing around with them as normal. Agree though that stress plays a huge role in the whole thing and am trying to cut it out of my life or at least limit it. I am also trying reflexology to see if that helps. Like so many others I've been having on an off symptoms now for about 6 years (tingling, pins and needles, weakness, speech problems), fortunately up until last year my symptoms were fairly mild and I'm generally healthy and active so am really hoping to control this somehow. My diagnosis followed a bout of optic neuritis.
Any tips from anyone? I've been taking vitamin D, fish oil and evening primrose oil for the last few weeks.
It would be so nice to talk to others in a similar situation.
Hi Ladies, well it's fairly sad to hear the fear and confusion in some of your posts. I have been going through the same thing for the past 11 years and it's been hell. It's wrecked my relationship of 15 years and I have had to change much of me and what I love to do to deal with it on a daily basis - and I still have no diagnosis. Well, that's not exactly true - I do have a formal diagnosis of CFS (which I think is a load of old tosh, but as I have had a national MS expert tell me I don't have MS I think it's the best I'm going to get!). My GP tested my vitamin D levels as he thought it might be that and the blood test came back below 10 (undetectable and severe deficiency). He started me on D3 supplements but my symptoms still continue to get worse
I have terrible symptoms - vertigo, awful balance, things moving around me like words and the pictures on TV, pins and needles, numbness in feet, bladder probs, pain, weakness, unable to walk straight, jolts, twitches, pain in my eye etc.
Between 2001 and 2010 I had 3 brain MRIs which were clear, 3 c-spine MRI's (the second of which had an artefact showing and the neurologist said it was nothing and a normal scan but I panicked and he repeated it - the repeated scan along with the other 2 scans was normal), 1 lumbar MRI which was normal, a lumbar puncture which was normal except a funny enzyme related to sarcoidosis and apparently means immune activity is taking place but is not relevant or specific for anything and nothing related to MS was found in my LP (the neuro did a chest x-ray to check for sarcoidosis, which was normal), Visual Evoked Potentials which were normal, Sensory Evoked Potentials which were abnormal for my right leg only but as I wasn't having any symptoms in my right leg the neurologist said it's of doubtful significance, 2 normal EMG's and 2 normal NCTs' (in fact my peripheral nerves were found to be firing more than 2 standard deviations faster than the general population!!). I have been told if I had MS lesions would have shown up by now (really?), and that I have CFS. I am so frustrated. This has cost me a lot in life so far and I just want to be able to do something to help it if I can. I am now at the stage where I am going back again to a second neurologist (who is private and is quicker to see but who is nowhere near as nice as my NHS neurologist), who I know thinks I'm a nut job. He sends letters to my GP saying things like 'I saw this healthy lady again today...' and this is when I'm covered in bruises from falling into things. I wish they could find a blood test or something more accurate so we could know what we're dealing with. The not knowing is definitely the worst thing. Having said that when I'm told I don't have MS I still have hope and I don't want to lose that. But when my life is screwed and I can't move for vertigo, can't walk straight because my balance has gone, and I wobble all over the place because of my on fire feet it's not much consolation!
Anyway, I just wanted to share my story and say chin up to everyone. I think we all find out in the end what we have, but it sometimes takes many years. I am still convinved that at some point I will be diagnosed with MS because my tests do show some minor abnormalities in the results - just not those they would expect for MS and the picture is very confusing. On my very first appointment with my MS expert neurologist he said that around 20% of all neurology patients he sees have 'functional' problems and that is exceedingly common as there is much that is still unknown about the neurological system - it is the most complex in the body. And 'functional' means there is no organic disease or disorder - your nervous system is not damaged, it's just not working properly, and that can be reversed. How helpful it is to be told that, and not know how to do it is debatable!!! BUT, ALL tests would have to come back completely normal for the 'functional' diagnosis to be true. It's certainly no fun going through this all alone now. Good look to all you ladies going through the same thing x
Mable - you should look up Jon Stone at Edinburgh University, as he is particularly interested in functional neuro problems. It's his speciality, and he may be able to help you, if the functional diagnosis is correct, which it sounds as if it is, given the numerous tests you've had. I can understand that you feel very frustrated by the 'lack' of diagnosis you have, but having a diagnosis does't take away the unknown. Although I understand it is horrible not knowing what is causing your symptoms.
pdm, sorry to hear about your diagnosis. It sounds as if you are doing the right thing by trying to pace yourself as much as possible. Give yourself time to let it sink in, and don't stop doing things with your boys, just be careful not to overdo it. It took me a little while to realise that I could still do things, even though it didn't necessarily feel totally comfortable or easy. Hope your doctors are helpful. Mine advised taking vitamin D, eating healthily (no extreme diets) and kept saying I wasn't 'ill', just had a really annoying, awkward chronic condition. I feel reasonably hopeful that lots of advances are being made re treatment, so there will be better help in the future, and I just try not to dwell on the worse case scenario.
Hey pdm, sorry to hear your news.
DH was diagnoses last year and has been taking vitamin D and fish oil almost religiously since. He isn't on any DMD as yet, as he has recovered during the remitting parts.
The uncertainty is by far and away the hardest part, but even this small things makes it feel like we're taking back a bit of control.
Thanks for all your responses, I had another relapse since posting my last message and so have been out of action for a bit, but started on the DMTs now which is going ok and starting to feel a bit more normal! No nasty side effects yet!
BTW, my lumbar puncture was normal too but the neurologist came back with a diagnosis of MS despite that based on clinical findings and MRI.
Any dietary tips? I've just been told I'm wheat, cows milk and egg intolerant too - not sure what to eat!
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MS is NOT life limiting unless you let it be!
I'm 35, have MS which was diagnosed when I was 28, I have three children and am happily married. When I was first diagnosed I was in a way pleased as all these annoying symptoms I had been having for years finally had a name and I knew I wasn't going crazy - I wasn't a hypochondriac I actually had something - yes it was MS but I wasn't going to let it get me down.
It was diagnosed as I had quite a few irregular symptoms, an MRI showed lesions on my brain and a lumber puncture which showed the protein bands that indicate an auto immune disease.
I think you are allowed days when you feel sorry for yourself in the beginning but not to many - you now have to live your life knowing that it's in your hands and it can go either up or down.
You will have days when you are really tired but you know have to read your body and when you are tired REST - that is the most important thing. A good routine and rest. Don't get run down. If you have children put them into a good routine too and it will work well.
At first you might be finding it a bit overwhelming but you will be FINE! Just keep telling yourself that you can do it and try to stay positive. Many of the books and research say that people with positive attitudes with MS live healthy lives with fewer relapses.
One of the first things my Neuro told me to do too was to cut out caffeine... switch to decaf everything! and if you drink cut out alcohol for a while until everything feels better and then only limit it. When I did this I felt SO much better (I think I was drinking to much of both anyway ) Surprisingly I didn't feel as tired anymore and as a bonus cutting out alcohol makes you loose a bit of weight!
I am also not taking any medication for MS. I have personally decided that I want to wait until I really really need it before I take anything and at the moment I'm fine. I have many of the symptoms but I have learnt to live with them and luckily none of them are debilitating - more lifestyle annoyances.
I hope my personal story and little tip bits have helped a bit.
Take care and try not to over analyse to much... the doctors will get to the bottom of things and if you stay strong you will get through things. And have a nice cup to decaf tea x
Don't know if this thread is still active? Just wanted to say, I was diagnosed with MS in May. It was a long, hard road to get to that point.
Look after yourself and take care, any questions, please contact me!
Choochy at www.stumblinginflats.com
I wanted to post on this thread although all of them are between people who have lived with MS for a number of years to those who have only recently been diagnosed. The original question being asked was whether MS was a life limiting illness - no it's not but there is currently no known cure. I write this as a sister of someone who was diagnosed at 28 and who is now 54. What I want to say is that although anyone who does not live with MS cannot imagine what it is like to live with it, there is the realization that a family member will never physically be the same again. I don't like to think of what might have been as it makes me sad. Don't forget that your diagnosis changes everything for the other members of your family Clare
I couldn't agree more. My dad died at 35 from complications arising from his MS, so I grew up without him. It is a cruel disease.
Now I have it and yes, it has been a long mourning period for me, wondering how differently my life might have turned out. There are opportunities I know I will never have now, such as working full time. This is impossible due to extreme fatigue.
When one of us has MS, the whole family dynamics change. My mum is devastated. Luckily though, my son is a teenager and able to adapt more and with Jack Osbourne 'coming out' with his diagnosis, he now thinks I'm in pretty good company! It's made it a lot 'cooler' for him now, to have a mum with MS.
I opted for an as yet unlicensed treatment, Campath (Alemtuzumab) in the hope that this would slow down the disease progression for at least ten years, after having relapse after relapse. I want to make sure I have the energy to see my son into university.
I'm still coming to terms with MS, how it's changed my life and my son's. Not quite there yet, but I am hopeful!
Choochy at www.stumblinginflats.com
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