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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.......

pinkytheshrinky Sat 17-Sep-11 09:51:25

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.

dogscatsandbabies Sat 17-Sep-11 15:11:18

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.

MrFranklyShankly Sun 18-Sep-11 19:39:11

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.

Thanks

Frankly

stitchthis Tue 20-Sep-11 23:18:34

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.

stitchthis Tue 20-Sep-11 23:19:12

Agree w pinky. Stay away from google!!!

MrFranklyShankly Wed 21-Sep-11 14:02:00

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

ihearthuckabees Wed 21-Sep-11 15:35:19

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

MrFranklyShankly Thu 22-Sep-11 13:18:34

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.

belledechocchipcookie Thu 22-Sep-11 13:46:41

Hi Frankly.

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.

ihearthuckabees Thu 22-Sep-11 15:31:09

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...

MrFranklyShankly Thu 22-Sep-11 16:02:04

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.

ihearthuckabees Thu 22-Sep-11 17:38:32

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.

belledechocchipcookie Thu 22-Sep-11 17:55:14

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 hmm 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 smile

Riveninabingle Thu 22-Sep-11 17:58:19

Message withdrawn at poster's request.

stitchthis Thu 22-Sep-11 18:04:14

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 hmm

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.

Elpis Fri 23-Sep-11 23:02:50

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.

MrFranklyShankly Mon 26-Sep-11 14:20:39

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!

belledechocchipcookie Mon 26-Sep-11 15:27:14

Has your GP given you any steroids Frankly??

MrFranklyShankly Tue 27-Sep-11 09:18:35

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....

Elpis Tue 27-Sep-11 09:31:21

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.

belledechocchipcookie Tue 27-Sep-11 11:13:13

Have sent you a DM smile

MrFranklyShankly Tue 27-Sep-11 16:45:14

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 sad

belledechocchipcookie Tue 27-Sep-11 16:58:38

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.

stitchthis Tue 27-Sep-11 23:07:04

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.

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