My husband has just been diagnosed with RRMS (or a tiny possibility of PSMD) at the age of 57 - so I know that is late onset. He is about to start on DMT. The problem is that he is terrified and his way of dealing with this is that he doesn’t want to know anything about the condition beyond what the neurolgist says. I have been checking things on the internet on his behalf and passing on stuff I think he can deal with. The neurogist has (I think) picked up on this and is I fear giving us an overly optimistic prognosis. He says that DMTs have changed everything, that it is entirely reasonable to assume my husband will live a pretty normal life, that he may never have another exacerbation etc etc. I just don’t know whether I believe him or not. I am the kind of person who wants to know the truth - however bleak - and I can’t bear this uncertainty. I have read that late onset is generally worse and MS in males also worse. I really don’t know where to turn. I can’t be frank with the neurologist as I am always there with my husband. I feel very isolated with this. Sorry to burden anyone but I would so appreciate some thoughts on this. Best wishes to you all, Caro
sorry - meant to write (or a tiny possibility of PPMS) - Caro
hi caro
its best to have a positive outlook so maybe let your husband deal with the DMT issue first.
there are a vast range of possible outcomes and its nigh on impossible to prepare for them.
have you got a ms therapy centre near you? these places are a great place to meet other people in the same boat. partners are welcome and the support is fantastic. there are lots of therapies available at a subsidised price.
once he starts on DMTs he should be referred to a ms nurse. this nurse is an invaluable support to both the patient and his/her family.
if its any help, i was a stroppy mare when diagnosed. i didnt think my husband was entitled to any opinions on it. maybe your husband is feeling the same.
now take care of your own health because supporting your husband through this difficult time could take a toll on you.
this forum is a good place to let off steam so carry on venting
carole x
Hi Caro, and welcome to the site 
As far as I know…
The reason that late onset MS is often worse is because older people are more likely to be be diagnosed with PPMS or SPMS which can be more rapidly disabling than RRMS (but not always). The male thing is a bit of a red herring - more recent data show that there is actually no difference between women and men who are diagnosed with the same type of MS.
So, if your husband has RRMS, then there is no reason to suspect that it will be any worse than any other RRMSer’s.
The main thing about how bad RRMS might become is how many and how bad people’s attacks are in the beginning. Basically, the more active & severe it is, the worse it is likely to be in future. (Again, not always.)
DMTs/DMDs (disease modifying treatment/drugs) have only been available since the very late 1990’s / early 2000’s and there is no doubt that they can make a massive difference. If we are talking about the injectable DMDs, some people find their relapses stop whereas some people find they don’t make any difference; everyone else is somewhere in between. The average is a reduction in relapse rates of 30%, as well as the reduction in severity of remaining relapses, the delay of disability onset, slowed progression, an increase in life expectancy. Most neuros consider any significant relapse after at least six months on an injectable DMD to be a “treatment failure” - at which point “second line” DMDs are available. At the moment, these are Gilenya and Tysabri. These drugs are more effective at stopping relapses and progression (but come with stronger potential side effects so aren’t normally used as “first line” options unless someone has highly active / aggressive RRMS). Tysabri’s clinical trial data show a reduction in relapses of 68% and progression of about 50%. Data that have been collected in clinic show that it is more effective than this, with an 81% reduction in relapses reported not that long ago. A lot of people find that their relapses stop completely.
So, the upshot is that although your husband’s neuro may be sugar coating things a bit, what he said is actually true - DMD’s really have changed everything, it is perfectly possible that your husband will live a pretty normal life (the vast majority of us do) and he may never have another attack (although unless he’s going on Tysabri, this is a bit of a stretch).
A bit more on the normal life thing. It really is true. Of course having MS sucks and it does mean making changes, but on the whole there is a big range of things to help us cope (e.g. meds, physio, OT) and life goes on much as before. Most MSers don’t use a wheelchair. Most MSers live a pretty normal life span. A lot of us rattle when shaken, but we still travel, work, get married, have kids,… laugh and love. MS really isn’t the end of the world. Life can still be good.
Given that you are someone who wants to know (I am too!), have a read at the free publications available from this website and from the MS Trust website. Avoid other sites for now - there is a lot of scaremongering out there! Remember that MS is massively variable and the booklets have to cover every possibility - your husband will not get every symptom mentioned!
Dealing with a diagnosis is a rough process - for the patient and for their loved ones. Be kind to each other and to yourself, and take it easy - one day at a time. It will be OK.
Karen x
I second Carole’s and Karen’s wise words.
It can make a tricky situation even more tricky when one’s coping strategy and one’s spouse’s coping strategies are very different. I do think it is important to try to accept and respect those differences. There is no right way to deal with an MS diagnosis (one’s own, or someone else’s).
Should you trust the neurologist? Well, yes, I think so - unless you have a better idea. No-one can see too clearly into the future when it comes to MS, so I think the neurologist’s judgement is the best thing you have to go on. For what it’s worth, it sounds about right to me.
One more point, and forgive me if this is just complete bollocks - it is very easy to catastrophize about MS. Many of us who have had an MS dx have done that (me included), and I wonder whether you somehow feel that someone has to do it, given that your husband isn’t going to do it for himself! I think that, in some unfocussed, superstitious way, we feel that by thinking the worst we will ward it off. Believe me, this is NOT an essential role! If you can avoid that pitfall, you will save yourself a lot of anxiety and heartache about things that probably wouldn’t have happened anyway. If you catch yourself trying to ward off the MS evil spirits by mentally beating them to it, please stop!
Alison
x
Hi Caro
Let me put it like this - the onset of my MS (as TIM) was at age 69. I did not have most of the dreaded MS effects (did get the MS Hug, though), and If I had started on DMD treatment when I was first told that I qualified, I could probably have saved myself several relapses. Even so, two years after onset, with RRMS as a Dx, I could still do a 10-day trip to the US (6 flights, 5 states, 4 conference papers of which I delivered two, three hire cars, and one visit to a “secure establishment”).
Trust that neuro right up to the point where you have reason to do otherwise. Just like Karen and Alison have said - do not trust everything that you read on the Internet, there is an awful lot of rubbish that you can find that really will not help you.
Just make sure that you have a phone number for an MS Nurse (an an e-mail address as well, if you can). A good MS Nurse will handle any problem first, and then tell the Neuro what has been done. If the Neuro backs up the nurse, then you know you have a good team.
Geoff
Carole, Karen, Alison, Geoff - thank you all for replying. I found so much to take from what you all said. I think I have panicked because not only did my husband not want to know about MS but he didn’t want us to tell anyone at all - so I had nobody to talk to… But we have decided now (jointly) to gradually let people know - as and when it seems right. Yes, I think I have a tendency to catastrophise - but I think it’s also because MS is so damn complicated. You guys are so knowledgeable but seems to me you need to sit down and study to get a handle on it. I went on this website - it was a research blog connected to St Barts in East London and I think it wasnt such a great idea in retrospect. I got seriously confused and that’s when the doubts about the neuro crept in. But, thanks all. Caroline
Geoff - do you mind me asking why you avoided the DMT treatment? Was it because of side effects? Best wishes Caroline
The Bart’s blog is full of interest - I get it sent to my inbox every day - but it’s pretty hard-core and is not at all what I would have wanted to look at when I was starting to get my head around the idea of having MS. That is not what it’s for. It would have freaked me out big-time if it had been my prime source of knowledge when I was newly dx, that’s for sure, and (more importantly) it would have left me with a very misleading impression of what MS means to most people who have it, I think.
The main part of this MS Soc website is a great resource, and I do recommend it - I have found it most helpful and reliable over the years, and still do.
Alison
x
I also get the excellent multiple sclerosis research blogspot delivered to my in box, but I completely agree with Alison - I would think that it is much too hard core in the beginning.
The info on here and the MS Trust website is a better place to start
Karen x
That is a fair question, Caro. It deserves an honest answer, so:
I dithered! It is easy to say now, but I dithered. Well, we all make mistakes - and this was one of mine.
What happened was that I was told that I qualified on the two relapses within two years and still able to walk 100 metres, and a date was set to come in and discuss it. The nurse involved went on maternity leave, a new one took over, and I went in for my discussion. the way it was put to me was that they could do the required assessment there and then (and wow, there is a neurologist ready to do it) and I had six months before I ran out of quaification. So I said OK to the assessment - and put off making the decision until a routine visit to the MS Nurse which was just inside the time limit. That was when I said yes.
So I had spent some of the time researching the different DMDs, and decided on Copaxone out of those available to me (I hate the thought of needles, having been through a spell when it was blood tests every month, and figured it would be easier to adapt to a daily injection that I could make part of my daily routine). With hindsight, putting the decision off was a mistake - and a real big one.
In the six months I dithered, I had 3 relapses. Now my relapses were never bad ones. Say about 7-10 days of extreme fatigue, could not even pick up a book and read (sort of thing), and then I said yes, and started Copaxone. That was in June 2011. I had one relapse in October of that year, one more in February of last year, and not even one since then. This looks like Copaxone is doing what it says on the tin. I guess that If I had said yes a few months earlier, I would have probably saved myself two, and maybe three relapses. Now, you lose something with each relapse, so I would have lost a little bit less. If I look back over that period, I would probably not have the very bad dropped foot that I have now, would not need two sticks and an FES to get about, and probably not got the intension tremor in my left hand that I have now.
So, I don’t know what life would be like if I had not dithered - I think it would be a lot better, but I cannot turn the clock back.
I would say that you should trust what the Neurologist has said, and that an early start to DMDs will probably mean that your husband can have a fairly normal life for quite a long time. But, the sooner your husband starts talking about it, the better (and that is both a personal and a professional opinion), as that is the best way of coming to terms with MS (or anything else that is really unpleasant, for that matter).
Hope this helps
Geoff
Geoff - thanks for your reply and for being so honest. I guess it does seem like a mistake in retrospect but eventually we do have to forgive ourselves for the mistakes we make. It’s that old cliche about hindsight … However thankfully you are now on something that does seem to be working for you. Quite honestly, from my newbie perspective, I am just grateful that my husband has got this disease now and not ten or so years ago. I have never before been quite so appreciative of medicinal research. And yes, you are right about the talking issue - I loathe secrets - and since we started telling others I (selfishly) feel comforted. Actually I think it’s also easier for my husband - although he had the unfortunate experience of one or two people visibly blanching at the news (I think they were stuck with the MS image of Jacqueline du Pre etc) but most people are pretty sensible about it all.
And Karen and Alison - thanks for the St Barts input. It probably wasn’t the best place to start. There is such a lot of info out there - it’s the worst illness I know of for that - if you see what I mean! Someone close to me died of MND so I spent time researching that and it was a lot simpler…
Thanks again, Caro