Is MS Life Limiting Illness?

[MrFranklyShankly]

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.......

[choochy]

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!
Best wishes,
Choochy at //www.stumblinginflats.com

[ClareMarriott]

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

[choochy]

Hi!
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

[marlob]

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

[pdm]

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!

[ChairOfTheBored]

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.

[ihearthuckabees]

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.

[MableLabel]

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

[pdm]

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.

[georgilly]

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

[MrFranklyShankly]

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.

Frankly

[georgilly]

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.

[Stitchthis]

Hey frankly how's it going?

[ChairOfTheBored]

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...

[Sudaname]

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 .

[MrFranklyShankly]

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

Frankly

[Sudaname]

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).

[Sudaname]

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 ?

[ihearthuckabees]

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.

[Sudaname]

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

[MrFranklyShankly]

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

[Sudaname]

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).

[MrFranklyShankly]

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...

Frankly

[Sudaname]

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