This is the first time I’ve ever used a forum, and I think I’ve already messed up. I think I’ve put my message on another contributor’s blog so it looks like a reply to him…APOLOGIES! Anyway…story so far…3months ago son 34yrs collapsed suddenly at work with fits. Taken to hospital…loads of tests MRI lumbar puncture etc etc.Four areas of swelling and lesions found in brain and through process of elimination he has now been told he probably has MS. Main symptoms now are frequent bouts of dizziness and headaches made worse by movement especially by car or train. Some problems processing oral information made worse by tone of voice and background noise. Otherwise he is still able to do some work and appears outwardly ok. A recent 2nd MRI scan has shown lesions in his neck. As a mother I’m trying very hard not to fuss nor to interrogate him about how he’s feeling…but inside I’m screaming what’s going to happen to him??? The websites are not a lot of help because everybody seems to have different versions of MS. We don’t yet know what type He has got. How long is a remission meant to be, to qualify as a remission? He certainly hasn’t had a period when he’s been completely clear of any symptoms in the 3 months since his collapse. Does MS come on that suddenly with no previous symptoms? Does that mean he has a particularly aggressive form??? OMG what is going to happen? Will he end up in a wheelchair??? Oh you know what I’m imagining…I’m desperate for information so that I can support him the best I can…help me out there!! Please.
It sounds like you have lots of questions to ask your son’s neurologist (I assume he has one) and lots of general questions about MS. For the latter perhaps you could ring the helpline from this website and they can answer some questions and send you some leaflets. And there is also lots of very helpful information on this website. Every person’s MS is different and not everyone ends up severely disabled so it is best not to worry too much (easier said than done I know), just arm yourself with facts. It can take months to get over a first attack of MS by the way (usually called clinically isolated syndrome), I am still recovering from mine nearly 4 months on, and mine did come on suddenly with no previous symptoms.
Thanks so much Puddinglover for responding. I was regretting posting on this section of the blog as it seems mainly for those of you directly affected, but I don’t seem to fit the partner/carer’s category either as I’m not having to do personal care for my son. What is so bewildering about MS is that there seems to be so many variations and I need to know what’s best to do for him and get mentally prepared for what will follow. I haven’t seen his neurologist and I don’t think my son will allow this anyway. I have seen and deciphered some of his referral letter to the MS specialist, but ofcourse it is merely a statement of facts. I have been reassured from reading some of the blogs and watching the info clips that in fact most people with MS remain pretty independent for some time, but because his attack was so sudden I am panicking a bit that his form of MS is particularly agressive. I strongly believe that in his case it was triggered by stress, combined with the fact that he has been taking a combination of strong painkillers for several years to try and damp down severe pain from a traffic accident. Anyway, thanks for the support, and yes I will give the help line a call I think, when I’ve got a clear couple of hours when I won’t be in fear of being caught out fussing or blubbing by husband!
This forum is not just for MS sufferers but for the people that support them That’s my understanding anyway and I’m not surprised you’re so worried! You will get some support here so keep posting if you want/need to.
You’ll probably see from this part of the forum that there’s a lot of people in limbo as MS can be hard to diagnose, the fact that MS is different for everyone makes it so much more confusing! Personally, my diagnosis was a shock, I thought I had trapped nerves or something, I knew very little about MS tho and even my neuro said “it kind of crept up on you didn’t it?” - it looks like I have PPMS so no shocking events, just lots of small weird things and a huge difficulty walking.
Anyway, I digress. I don’t think you can really prepare him, just be there for him. My Mum wasn’t too shocked… she had noticed the more I struggled, the more I’d turn my right foot outwards, she had a neighbour with MS and she saw the similarity. I was and still am massively thankful for the support my Mum has given me
Take care and come back, I truly hope he has nothing serious
Thankyou sooo much Nindancer. Being a senior citizen and appalled by the goings on in chat rooms I have been very anti the whole idea of “talking” to complete strangers about your personal life…but this forum is the reason why they can be a God send to people needing to reach out to someone who can understand. (Typically I am now worried in case my son spots this forum and recognises my user name!) What has really shocked me is how sudden this collapse was…no warning symptoms or anything. He has always been a larger than life fella, ready to help anyone, anytime, and then this hits him. The idea that he will gradually deteriorate is so distressing. I try not to ask how he’s feeling too often, but its been nearly 6months now since his collapse and I keep hoping that the next day he will be feeling much better and we can say that he is “in remission” at last.
Anyway Nindancer, thanks for reaching out and giving me a “virtual hug”. You said you’ve got PPMS, I’m going to have to swat up on all these initials and abbreviations so I can understand messages easier, are you able to cycle at all? Did you know that there is a really wizzy recumbent trike which can have an electric motor fitted to assist pedalling. It can do a legal 15mls an hour (or a very illegal 30mph off public roads!!) XX
Hi and firstly welcome to the forum although I’m sure that it’s not a place that anyone would choose to be! Ms CAN happen out of the blue and it doesn’t necessarily reflect on the type of ms that your son has. I got ill out of the blue last year with no prior symptoms and then in the summer of this year I was officially diagnosed with relapsing remitting ms. I’m not sure if you are familiar with ms or the types of ms but most people panic at the mention of ms and assume that everyone will end up in a wheelchair etc. There are plenty of people that live with ms that don’t require a wheelchair and a diagnosis of ms doesn’t mean that your sons life is over it just means that he will have to adapt slightly. I’m sure on his own time he will feel able to discuss things properly and may in time ask you to attend his neurologist appointments with him but I’m guessing he’s trying to get his own head round things at the moment. I would suggest gently mentioning to him about the ms society and this forum as it can be a great help for those awaiting diagnosis/ newly diagnosed and also for those that are affected by ms such as family and friends etc. I wish you both all the best and I hope that has answered a couple of questions and put your mind at rest a bit.
Thankyou Anon. Yes this website has already helped me…I found out that you can self refer to the MS nurse and got the fone number from the surgery yesterday. I gave it to my son " just for information" and left it up to him if he wanted to use it. Also I found out where the local ms support group were, but I think that’s a step too far at the moment. He’s trying very hard to carry on as normally as possible…difficult when of course he had to give up driving for the 6mths after the fit. Anyway he has been told he will be able to use his licence again on Christmas Eve! Although he is sensibly saying “only if he feels well enough”.Having to rely on public transport has made getting around a major production, and he hates asking me…however he has had very prompt help through the “get to work scheme” with asssistance with train and taxi fares and of course free bus travel…so make sure you all take advantage too…you only have to ask! At the moment he is having problems not being able to sleep at night. I have suggested the obvious hot milky drink…any other ideas folks? What we are both finding frustrating, and it seems to be a common complaint amongst all you club members, is the awful delays in referrals and therefore the next step in advice/treatment. As per usual it no doubt depends on the council funding, and perhaps MS is deemed not life threatening and therefore takes a lower priority when money is being shared around. Limbo is a word frequently used on this site…so true…what I find difficult is not being able to talk about it for fear of making things worse by fussing, and I know my son doesn’t want to worry me so he rarely volunteers anything and says he’s fine when I know he’s not. Thank Heavens for you lot out there! Big Hug.
Gwilli, you mentioned in one of your responses that you are keen to not make things worse by fussing. I think that taking care not to make things worse by fussing is the single most useful thing you can do for your son at the moment, second only to being his loving mother.
Difficult as it is, I think you need to take your cue from him and follow his lead in terms of how he wants to play this. He has a lot of difficult things to digest at the moment, and he will do it his own way. To put it brutally, he has enough to worry about without having to worry about you. Many of us on here who have MS remember with wry amusement the bizarre feeling of having to be the voice of calm while our nearest and dearest have nervous breakdowns around us. Believe me, it happens!
As you have found, there is a world of information out there, not all of it helpful. As the single best source of information for someone new to this who wants to know more, I would strongly recommend to you the main part of this Multiple Sclerosis Society site - the bit that has all the formal info. It is reliable and well-written and a very good introduction. It will tell you what you need to know to be able to make sense of what you hear about your son’s condition and what the doctors think about it. Please do not be surprised if your son is not interested in finding out anything much about what might ail him. SOme people want to swallow the library - I think you want to and I know that I did. Others just blank the whole lot out until they feel ready to explore a little in their own good time. I think it is one of these area where we just have to accept that we are all different, however closely related we might be!
Please look after yourself too, and try not to panic. Of course you will worry - how could you not? But do remember that you cannot cut a deal with Fate in which you gladly agree to make yourself ill with worry if that will protect your child from harm. That isn’t the way it works, I’m afraid. Finally, if it does turn out to be MS, that is very bad news of course, but it is not the end of the world. Most of us make good lives for ourselves.
Aw Gwilli hugs right back!
Alison is so right, the guilt I feel over the worry I cause my Mum is immense! But at the same time, it’s really touching to know that you are concerned about your Son and I’m sure he would see that if he knew
Putting the boot on the other foot, the guilt I feel towards my step-daughter is even worse! As she doesn’t always get on with her real Mum and she was the first person to say “How are you holding up in the heat?” in the summer. She followed the MS Society on Twitter & Facebook so was the first person to twig that I might be suffering!
I think as soon as MS is dragged into the equation, things get tearful - It is so unpredictable and that’s probably the worst thing about it!
OK, got to go BUT take care
What can I say to you both? Thanks sooo much for listening to me in my angst. Big Hugs to all of you out there>Night night + sleep tight.