OK I have ms! I hate this! I just have to cum out all over again! Only this is just (strangely) a bit harder.
This is the first time I can say without any secret I’m paul and I have MS! I have been a bit ov a idiot!
The thing is… I have been hiding this from everyone,I have a close and loving family. My brother has had cancer
But after long fight he has been given the all clear
How do I tell them all now when everything looks good?
How long do I wait b4 telling them?
Is there a ever going 2 b a time when I don’t make a excuse?
6 months and I’m still none the wiser!
Help me!
MS is nothing to hide so why do you hide it ?
Your brother didn’t hide his cancer so why do you hide your MS?
One day you will need your family to know what is wrong with you because you will need their support. Multiple sclerosis only gets worse so you must tell people. I know it’s your choice and in my opinion it’s a bad choice and reading your post I think you want to tell them but can’t.
By the way, I am delighted for your brother.
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OK - l have MS - have done for 33yrs. lt was obvious to everyone who knew me that something serious was wrong with me - l went from being a very fit active young woman - to looking as if l had suffered a stroke. l was pregnant at the time - so life became very difficult - when it should have been the happiest of times for me. My MS - is PPMS - which is the worst of types as you have no remission. lts there all the time - and all symptoms stay - they never go. l became doubly incontinent from the start - and lost the use of my left leg/foot. Left arm and hand much weaker and slower. Speech slurred.
But l had a new baby – and life goes on - other more important things take over - and like many on here l have battled to keep going - and keep smiling and laughing. l have always tried to fill my life with things l love - mainly my animals/pets. They need me to get up in the morning - and put their needs first. Spend my life cleaning up after them. Dogs need lots of exercise - so l do go out everyday in all weathers on my scooter with mine.
l realise that how you were before you got MS - makes a big difference to how you cope with it. Some of us are very ‘stoic’ and others are defeatist. You can read the threads on here and tell which are which.
l have a lot of admiration for many of them that have not only got MS - but have also got - or had - cancer. Some have children /grandchildren with serious problems - Two wonderful ladies have children with autism - and still they manage to hold life together- and with great difficulty. My hat goes off to them. Especially, as they are always the first to ‘lend an ear’ to anyone else who is in trouble.
What l think l am trying to get across is - Life goes on - and life is not always easy. And of course - so many worse illnesses then we have - physically and mentally.
Take a deep breath - clear the air - and tell all. Tomorrow is another day - make the most of it.
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I’d get treatment, if I were you. It is no longer true that a diagnosis of MS means you will be become progressively worse. Here are the results from a five year study of people treated with Alemtuzamab (Lemtrada).
RESULTS: 393 (93%) alemtuzumab-treated patients completing CARE-MS II enrolled in extension. Through 5 years, 91% remained on study, 60% received no alemtuzumab since the initial 2 courses, and 8% received another disease-modifying therapy. Low annualised relapse rate (0.21) was maintained over Years 3-5.
For the first five years, 76% of patients were free from 6-month sustained accumulation of disability, 77% had stable or improved EDSS, and 43% achieved 6-month sustained reduction in disability. More than half of patients (52%) had no evidence of clinical disease activity over Years 3-5.
If you want to read more about this, it is at Multiple Sclerosis Research: Alemtuzumab 10 years on
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I totally agree with spacejacket. EVerything she says rings true with me. Tell them. Get it over and done with. It is not your fault. Just the way life is. GEt it over with and move on. Good Luck.
Sewingchick. I take everything with a pinch of salt. Been here too long to think otherwise. I have PPMS and there is no treatment for us. Nothing. So all of us get on with it.
I find some people with MS don’t even know what type they have. Maybe it is too much information for them? However, they are all progressive in some way or another. We are all different., Some people get lucky and don’t perceivably progress. For others it can be worse.
Treatments for MS are like cold treatments. Drs. cannot treat the common cold. You can take medicine to make you feel better whilst having the cold and maybe shortening the time you feel rough. But they cannot cure it. Same with MS. All the treatments at the moment may make the relapses shorter and make you feel “better” whilst they are happening. But they cannot stop or cure them.
Please don’t think I am being negative. I am a realist and I always look on the bright side of life, seeking out the laugh. My mantra is “prepare for the worst, Hope for the best” However, I don’t like to see people with MS being given false hope. Hope definately but not false hope. I am not saying that is what you are doing. I am saying that is what people can read into the things we can access on the Web.
If you speak to any Neuro they will tell you what I have said. I got it from them!!.
I hope this comes across ok. I don’t mean to throw water on anyone’s chips!!.
Anne
x
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Your neuro is wrong if he told you that doctors can’t treat MS any more than they can treat the common cold. The world changed when Lemtrada became available. At that moment, MS became a treatable, possibly curable disease. I put the statistics in my post because the statistics tell the story. They will tell Paul that he hasn’t got an untreatable disease, he’s got something similar to cancer and he shouldn’t sit around trying to “come to terms with it”. I would suggest that Paul (and everyone else diagnosed with MS) should do what they would do if diagnosed with cancer - that is seek effective treatment.
That’s what I’m doing - my treatment starts next week.
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We are all different of course, because I refuse to have treatment for MS. I used to have Avonex but it made me so ill cm off of it realising that with MS you just choose your poison. Not everybody agrees with that.
There are two things about people’s attitude towards these types of diseases that I think are wrong although others might disagree. The first is keeping it to yourself, I can never understand why people do that. It is only a disease, everybody gets them of some sort or another. The other is self-pity, I cannot stand people who self-pity.
Flo
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Anne, You have PPMS - like me. So we are left to get on with it - as there is no treatment - at the moment - although l do take Biotin - and have felt better for it. But certainly no cure.
How they can come up with statistics saying improvements have been made on any of the drugs given to RRMS - how can they know these people would not have improved anyway. The title is the clue - Relaxing - Remitting - Whereas Primary or Secondary Progressive is just that - getting worse all the time.
l am hoping that the biotin will slow down progression - at least encourage re-myelination. lt certainly helps people with control of their bladder so hopefully is doing more good in places we can’t see.
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Ocrezilumab has done well in clinical trials for treatment of PPMS. Not available here yet but I don’t think it will be long. You can read about it here
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Hi i am like you i got diagnosed finally after 10 years but i am sure i had it prior to that.
I have chickens, bantams and rares, and everyday i have to get up and feed them and clean them, i also have my dog and take her out in my scooter. I hatch chicks and care for htem too for friends.
Without doing that I think i would be in bed permanently now, as i was told by my GP if you dont use it you loose it, (legs), so i am determined to keep going until i cant anymore.
Whilst i have been suffering with MS, i have known people diagnosed with cancer and several have died now younger then me.
Its MS i just get on with it. Getting my label actually made no difference to me, i am PPMS now too.
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It’s your own choice if you don’t want to be treated for MS. I’m posting to say that there are effective treatments for RRMS and SPMS with relapses - Lemtrada, Cladribine and HSCT. As I said above, Ocrezilumab is on the way as a treatment for PPMS. Large double-blind, placebo-controlled trials have shown that these drugs really work. That’s science for you.
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There is no such thing as the perfect time to tell nearest and dearest. There hasn’t been an ‘ideal’ opportunity that has come and gone and you’ve missed it.
MS isn’t your fault any more than your brother’s cancer was his fault.
What I would say is that people sometimes find it easier to get their head around a diagnosis like his than a diagnosis like yours. When someone has cancer, people can say ‘get well soon’ and mean it and there is a real chance that it will be so (and hurrah for that). You don’t get many ‘get well soon’ cards when you tell people you have MS. So if you ever feel that your news is meeting with a more puzzled and complicated response than the straightforward sympathy and support that your brother probably got, try not to take it personally. It won’t be you - it will just be the nature of the condition - most people don’t even know what it is and most of anything they think they know is wrong. However much they love you, people really do not know what to say, quite often. But never mind: please bite the bullet and tell them anyway, as soon as you feel ready to. Carrying the burden alone is lonely work.
Alison
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Hi Paul
Strangely, I understand why you don’t want to ‘come out’ as a person with MS.
Partly, I’m sure from what you said in your post it’s because you don’t want to spoil the good feeling your family have as a result of your brother beating cancer. But also, for as long as it’s a secret, you don’t have to be a person with an incurable (sorry Sewingchick but I disagree with you about Lemtrada being a ‘cure’) neurological disease. I think that when you’re first diagnosed it’s hard enough to get your own head round it without telling others. It maybe something to do with accepting it that makes you reluctant to tell other people.
However, for as long as you are hiding from your diagnosis, you are also denying yourself the very real benefits of a disease modifying drug. In your newly diagnosed (I presume with relapsing remitting MS) condition, the general consensus of opinion is that the sooner you get on a DMD the better. The first line drugs are excellent these days and manageable in most cases. Have a look at the information on this site: https://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs
There is also a section on this site about coming to terms with MS, that also includes telling people you have it: https://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms
I wish you the very best of luck whilst you are dealing with the crap that comes with having MS. I’m sure that your family and friends would be horrified that you’ve been living with this for 6 months without their support and will be invaluable to you as you gradually learn to live with it.
Sue
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Sue, you are not disagreeing with me but with the statistics from the trials on what happens when people are treated with Lemtrada. I’m fine with that - a little bit confused about why - but fine with it. You might want what I posted again though.
Paul P… i understand where you are coming from.
fact is and as said, there will never be a perfect time. bad news is bad news.
if i were to suggest anything, it would be to not worry about it. easier said than done perhaps, but sincerely, do not worry about it. in fact, forget about telling anyone. if a set of circumstances crop up where the only feasible explanation is that you have a yucky disease, then drop the bomb shell then.
alternatively, if you simply grow bored of making excuses for your visible symptoms or tendencies, then just let ‘the truth’ be known.
for me, in my life, a very small number of people know of my diagnosis. as far as i can tell, my symptoms are not obvious and so they do not register in the minds of others and they most certainly do not impact upon their lives. it therefore comes under the ‘none of their business’ category of disclosure.
i have made a few modifications to my diet and behaviours. for these i make excuses which do not require much creativity; “why do you not eat beef?” = i feel bad for cows…
MS is ‘more shit’ 
do not give yourself even more stress to contend with, by agonising over if or when to share bad news.
but… with all this being said, the fact that you have started this forum thread suggests that the subject is bothering you at least a bit… so if for no other reason than to unburden yourself, just tell everyone and anyone and do it now. just do it now. if it will make you feel better, what the hell are you waiting for?
just as when i went to see my GP following my initial MRI scan they said “well good news! it is not cancer!!” :S
good luck!
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I just think it’s a bit soon to proclaim it as a ‘cure’. Some people have had truly dreadful experiences with the drug and have ended up worse than they started. Maybe in 10 years it’ll be OK to claim it as a cure.
I totally get your perspective and were I in the right place, in terms of my level of disability, age of diagnosis, and hadn’t had iffy drug reactions too many times, I would be right there with you demanding Lemtrada.
I remember hearing about it in about 2002 or 2003 (when it was still known as Campath), it was truly early days for it and I’d only been diagnosed for a year or so. I would’ve swapped my left kidney for it but it wasn’t on offer, that was the days when you counted yourself lucky to get beta interferon as part of the ‘risk sharing’ scheme.
So I understand why you’re so eager to give it a whirl. In your shoes I’d be the same. I don’t believe it’s necessarily a cure as yet, but it’s the closest we’ve got to it.
Sue
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I’m not having Lemtrada, I’m having Cladribine.
My contention is that if three quarters people on a big trial of a drug for MS stop deteriorating, for five years, then that drug looks like it might be a cure for MS. That’s what those statistics say.
For some people on here, these drugs may have come along too late, and that is really, really sad. But for someone like Paul, who started this thread, it is not too late. That’s why I suggested that Paul seek effective treatment for his MS. That’s what I’d suggest to anyone at his stage.
Sorry, I’d forgotten you were getting Cladribine. Brain fog makes my memory an absolute sieve.
Sue
Hi,
I remember when i was 23 i got diagnosed with crohns disease and my grandma did not want anyone to know, i believe it was down to fear and in her age group when people with illness and disease were often shipped off to those awful infirmaries, some of them still in use today.
I wonder if that same fear is still around today, what will people think of us if they know we have a disease or condition where there is no cure.
I think you should only tell people if you are comfortable with that and what you tell them is your choice.
Sometimes i find it frustrating if i mention to people that i have crohns they suddenly become experts and say things like…you wont be able to eat certain food will you…to which i reply, No, i can eat exactly what i like. My point is i dont have the energy to fill in the gaps of what they know and dont Know.
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Hi, The pressure your putting yourself through will not be helping your MS…in the beginning its normal to sort of hide it from people and in time you will acccept and move on…would be easier if family knew…
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