yesterday i got a copy of a letter from my consultant to my gp. in it, it say’s i have primary progressive ms. i have read up on it and dont much like what i’ve read! it has turned my household upside down. my wife was a cook in a care home and there were 3 residents who were severly disabled, wheelchair etc with ms who passed away. so needless to say we have had some very frank conversations and now i just don’t know whats going to happen to my marrige. part of me thinks it would be easier to walk away, my wife is only 27 and i don’t think it’s fair on her to go through this. maybe a few day’s away is the answer?? HELP!!!
hi ben
i don’t like the way that your neuro broke the news to you. surely it would have been better face to face.
you both must be in shock right now.
having said that, ppms is a rotten diagnosis but it doesnt mean that your life is over.
do you go to any ms society groups? or ms therapy centres?
it may be useful to meet other people who have ppms.
have you tried ringing the ms society helpline?
you really need some coping strategies and someone to talk to who isnt closely involved.
a few days away could be a good idea but make sure that your wife knows that its just so that you can both come to terms with it.
you sound young and it really is a head f**k for you
take care and i hope that you get more useful replies
carole x
Hi benbaker, Welcome to the board. I also have PPMS
PPMS is different for everyone, just like RRMS. Yes some people do get very aggressive PPMS, but some people get very aggressive RRMS.
It is simply not true that PPMS is the ‘worst’ type of MS. Personally I have had to give up work and I do have to use a mobility scooter to get around (same as many people with RRMS)… but I am certainly not waiting to die!
Come on the PPMS board and you will find a group of people who are living our lives with PPMS. Some of us are working… one of our group was working until recently when she was made redundant (nothing to do with her PPMS) and she was dx with PPMS 22 years ago. Another of our group was dx 40 years ago! He is still living his life. Independent and happy.
Don’t believe everything you read on the internet. Come and meet us on the PPMS board and you will find a supportive group of people who are happy to share info and advice… and always manage to have a laugh!
Also, as highlighted recently in the MSS magazine, MS Matters, there is LOADS of research going on at the moment to find treatments for PPMS and to stop its progression.
Don’t even think of walking away from your marriage!!! PPMS does mean a big change in your life but it is NOT the end of your life by any means. Give yourself time to get your head around this and you will see that life continues with all of its joys and sorrows… most of which have nothing to do with MS.
See you on the PPMS board!
Pat x
hi ben, right, this was a shameful way to be told you have such a condition. it could have been done in a much better way, as I`m sure you agree.
PPMS…I do know quite a bit about it, as I was told I had it for 7 years. Prior to that, I had a high possibility of it, as my symptoms were very typical.
Anyway, turns out I dont actually it, but anothert neurological illness.
PPMS is the one type of MS which can be really hard to diagnose. Have you been told if you have lesions, as these sometimes hide in the PP form. I think it would help you to know how your neuro came to the decision that you have PPMS. I think an appointment with him is called for. You must have a trillion questions to ask. have you got an MS nurse? These bods can be a good link twixt you and your neuro, if he cant fit you in for a while.
I can well understand your fears for the future, having known about the people who suffered from PPMS at the home your wife worked at.
BUT PLEASE PLEASE, donn`t automatically assume that you will end up like them.
It happens, but not that often, that PPMS takes people early and in a drastic way.
I expect you will have looked on the PPMS forum of this site. People there will tell you how they are faring and i know a lot of them are doing ok-ish, but not as bad as being near the end of their lives.
Not all PPMSer end up in a wheelie even. Plus having PPMS doesnt always mean a shortened lifespan either. There is still a good life, to be lived with PPMS. Honestly, there is!
Now about your wife…please dont assume she will want to ditch you. Talk to her. You have both been dealt a massive blow. I am sure she still loves you dearly and wants to stay with you.
Dont write yourself off. but you both need time to take all this in and yes, maybe changes will have to be made. But you can do these together.
I hope my nagging helps in some way.
We are all here for you. take care.
lots of love Pollyxxx
Hi Pat, I see you have also replied to benbaker. I felt so sorry for him and wanted to try to allay his fears, if I could. Yours is a good repy. We oldies` have to try to help the newbies, eh?
What you up to this weekend?
luv Pollx
l
apparently the nuero told me that he thinks i’ve got ppms and i do remember talking about the duration i’ve had my symptoms (10 yrs+) so i’m hoping that suggest’s a slow proggresion! i’ve only seen him once since the mri so to me it’s still up in the air as to what type i have. and yes pat i am going to stop scaring myself to death reading about it on the internet!! i have been in contact with the ms society and they sent me what i’ve been calling ‘a welcome pack!’, lots of excellent literature on all my symptoms. they are a brill organisation!! also i have been smoking cannabis and that seems to work wonders but i read (on the internet, sorry pat!) that it has not been shown to help people with ppms only rrms so does that make the diagnosis wrong?
i realise it’s still early day’s, i’ve not met the ms nurse yet, and i suppose they fine tune any medication given?
thank’s for your replies,
ben
oh and yes i have several lesions in my brain and subtle ones in my spine!
Hi Ben, I don’t think the fact that cannabis helps can be any measure of if it’s RRMS or PPMS. Not exactly scientific evidence! I’m sure cannabis probably helps PPMS as well, if only because it relaxes some people.
I also had had symptoms for about 10 years when I got dx… on and off and nothing serious… and mine is slow progressing. So think that yours suggests the same.
It is very early days. Give yourself time to take it all in… it does take time. Your emotions go crazy at first but Ben I promise you it does get easier. You get to know your own MS… what you can do and what makes it worse. It does actually become sort of ‘normal’ after a while.
Don’t think ahead of your MS. In other words, just deal with the symptoms you have now and try not to go into panic mode thinking what ‘might’ happen. Everyone’s MS is different and just because someone else with PPMS has got certain symptoms, it doesn’t mean that you will.
For now, remember, one day at a time… oh and talk about it Ben. Don’t keep it all pent up. Hope you are talking about it with your wife… it will help both of you and no doubt she’s worried too.
Pat x
Hi again, glad to hear you are sounding a bit less stressed and in panic mode.
luv Pollx
I am sorry you have had this bad news. It is a shocking thing to hear, both for the person with MS and for the people around him or her.
On your wife’s fears - I think that a diagnosis like this holds particular fears for people who work in residential care homes. By definition, the people with MS that they see tend to be the people who have had the really shitty end of the stick and have ended up very disabled. That very disabled person might have had 30 years or more of active life with MS, bringing up children, building a successful career, caring for other people, writing prize-winning novels, making vital scientific discovereries, or just plodding along enjoying life like the rest of us. But the care home worker sees only the very disabled person whose life has perhaps narrowed very sharply and looks frighteningly bleak. It is no wonder that your wife’s perspective on MS is a very unsettling one, but it is not the whole picture. Most of us with MS are luckier.
It is a lot for you both to take in. Please believe me when I say that life can be OK with MS, really it can.
Alison
x
Alison, just want to say what a wonderful post and so true!
Pat x
we have had several chats about it and i think we’re turning a corner, thank-you all for your msg’s they really have helped!!
Hi
I just want to add my positive note to those left by others. I’ve got a secondary progessive diagnosis so I know something of how you feel. The difference for me was that I’d already had MS for well over a decade so it wasn’t such a gob smacker.
I’ve been SP for about 3 years now and I have gone downhill, use a wheelchair and live in adapted housing. HOWEVER life is still good – in fact I’m involved in more things now than ever before.
I don’t doubt that one or two people end up badly disabled in care homes but not all with a progressive dx. - by no means all. Life is still there for the living.
I couldn’t agree more with Pat about speaking to people who are actually getting on with it rather than anonymous doom and gloom reports on the Internet.
Jane
PS There is a possibility that I had Primary Progressive from the start because I didn’t have relapses but it was never defined. If so, I had PP from 1995 and I’d need more space than there is available to write down all the things I did before my mobility went to pot.