Aa
New MS Diagnosis
Hi there,
I have been in a loving, nurturing, and committed relationship with my boyfriend for over two years. We live together and have been planning on getting married. The day of my 30th bday we found out he has MS. My heart and soul hurts for him and for us. There is no way I am walking away from us but I seem to be in hurry now to get married and have kids b/c I am scared of how fast the progression will be. We have not seen a specialist yet so we are not sure of the level it is at. Is it normal and okay for me to want to speed life up? He is the man of my dreams and I am scared of not being able fullfill our dreams. I am also the type of person who likes to fix things, and dealing with a disease without a cure is very hard for me. I have read many articles on that he should stop smoking and start exercising. I know it has barely settled in for him. How long should I wait before encouraging him to lead a healthier lifestyle?
My feelings are all over the place...angry, sad, hurt...but mostly just confused on how to suck it up an just live life one day at a time. I am generally a positive person and find myself breaking down at random times.
Any helpful tips on how to handle this new stutation would be much appreciated.
Thanks,
Kellydiane
I have been in a loving, nurturing, and committed relationship with my boyfriend for over two years. We live together and have been planning on getting married. The day of my 30th bday we found out he has MS. My heart and soul hurts for him and for us. There is no way I am walking away from us but I seem to be in hurry now to get married and have kids b/c I am scared of how fast the progression will be. We have not seen a specialist yet so we are not sure of the level it is at. Is it normal and okay for me to want to speed life up? He is the man of my dreams and I am scared of not being able fullfill our dreams. I am also the type of person who likes to fix things, and dealing with a disease without a cure is very hard for me. I have read many articles on that he should stop smoking and start exercising. I know it has barely settled in for him. How long should I wait before encouraging him to lead a healthier lifestyle?
My feelings are all over the place...angry, sad, hurt...but mostly just confused on how to suck it up an just live life one day at a time. I am generally a positive person and find myself breaking down at random times.
Any helpful tips on how to handle this new stutation would be much appreciated.
Thanks,
Kellydiane
What counts as a relapse? That (or "am I having a relapse?") is one of the most commonly asked questions in these forums. And it's a gray area.
A relapse is a relatively sudden onset of new symptoms or a significant intensification of previously existing symptoms. But that definition still leaves plenty of gray area. If your boyfriend gets up in the morning with a symptom he hasn't felt before, that's indicative of a relapse. If he exercises, or if he gets a cold, and then feels an old symptom intensify, that's probably not a relapse, because short-term stress on the body can antagonize symptoms, and those will go away in hours or maybe minutes.
I could offer more examples, as could others, and some might not agree totally with my explanation anyway. Besides, the only definition of a relapse that really matters is that of your boyfriend's neurologist/specialist, and that doctor can provide guidance as to what should trigger a call to his office. Beyond that, he should explain how relapses will be treated. In my case, my neurologist says that the sooner we attack a relapse with steroids (infusions of Solumedrol for three or more days, one hour each day), followed by an oral prednisone taper for a few more days), the more effective our attack will be. My relapses have lasted only a couple of weeks, and I've never missed work as a result (except for treatment time) although I've had to curtail many activities during those times.
Others' relapses can be much more debilitating and last longer, but your boyfriend can attack this disease and improve his odds. When I was diagnosed, I didn't have message boards like this to ask my questions and vent my frustrations, so your boyfriend and other "newbies" are already a step ahead and your odds look good out of the starting blocks.
I should note that I'm writing under the assumption that your boyfriend as relapsing-remitting MS, the most common form. I think that's what you mean by "stage." Other forms can be more serious, and they would be treated differently, but they can be treated, and you will still be able to fulfill many if not all of your dreams.
A relapse is a relatively sudden onset of new symptoms or a significant intensification of previously existing symptoms. But that definition still leaves plenty of gray area. If your boyfriend gets up in the morning with a symptom he hasn't felt before, that's indicative of a relapse. If he exercises, or if he gets a cold, and then feels an old symptom intensify, that's probably not a relapse, because short-term stress on the body can antagonize symptoms, and those will go away in hours or maybe minutes.
I could offer more examples, as could others, and some might not agree totally with my explanation anyway. Besides, the only definition of a relapse that really matters is that of your boyfriend's neurologist/specialist, and that doctor can provide guidance as to what should trigger a call to his office. Beyond that, he should explain how relapses will be treated. In my case, my neurologist says that the sooner we attack a relapse with steroids (infusions of Solumedrol for three or more days, one hour each day), followed by an oral prednisone taper for a few more days), the more effective our attack will be. My relapses have lasted only a couple of weeks, and I've never missed work as a result (except for treatment time) although I've had to curtail many activities during those times.
Others' relapses can be much more debilitating and last longer, but your boyfriend can attack this disease and improve his odds. When I was diagnosed, I didn't have message boards like this to ask my questions and vent my frustrations, so your boyfriend and other "newbies" are already a step ahead and your odds look good out of the starting blocks.
I should note that I'm writing under the assumption that your boyfriend as relapsing-remitting MS, the most common form. I think that's what you mean by "stage." Other forms can be more serious, and they would be treated differently, but they can be treated, and you will still be able to fulfill many if not all of your dreams.
Thank you for your great advice and honesty. What counts as a relaspe and how long do they typically stay? We have not seen a specialist yet but the neurologist stated we caught it in the early phases. Will the specialist be able to say what stage he is at? Thanks for your help.
Thank you so much for your advice and taking time out of your day. Appreciate it greatly!
Great advice. Yes we have been talking about a small intimate wedding. That is sort of our style and I want it to focus on us and what's important. I have started to see a counselor once a week for now at least to help me get my head around things. We have our 2nd appointment this week so I am brining lots of questions with knowing that many of them will be unanwered and only time will tell. I found everyone's response uplifting and gave me hope to see our dreams still come true. Thanks again!
COMMUNITY LEADER
Hi and another welcome from me!
Sorry to hear about your man having MS and your concerns about your future life together. I'm wondering though about him and what he wants to do now, have you sat down and talked about it, really talked?
When someone gets their dx, especially when there's not been much time to get their head around what it all means, it can really throw them for a loop. They can suddenly find what was once important to them, just isn't anymore, their life goals shirfting dramatically, with some speeding up and others no longer on their list at all.
Weddings cost a lot of money these days, a trend over here in OZ is a very small intimate wedding with a big overseas honeymoon instead so they travel and see the world before life's commitments (eg mortgage and kids) make that option less likely to happen, its not a bad idea actually. I'm just trying to give you a heads up, open your mind, be ready to re-evaluate whats important to both of you.
Life isn't over, not at all, its certainly different and its totally normal for some people to want to speed things up but its also perfectly normal to want to slow it down or change things a little or a lot. One thing we've learnt as family, as a couple is to be flexible, ever ready to alter plans because there's no point getting hung up on things, no one can control whats going to happen so we've learnt to relax and enjoy the little things a lot more.
I think you need support too, you know your self better than anyone and if your not coping as you'd like or expect, then please do what ever you need, to get through this fase, reaching out like this is actually a great way to start :-) we're very good listeners!
Cheers.........JJ
Sorry to hear about your man having MS and your concerns about your future life together. I'm wondering though about him and what he wants to do now, have you sat down and talked about it, really talked?
When someone gets their dx, especially when there's not been much time to get their head around what it all means, it can really throw them for a loop. They can suddenly find what was once important to them, just isn't anymore, their life goals shirfting dramatically, with some speeding up and others no longer on their list at all.
Weddings cost a lot of money these days, a trend over here in OZ is a very small intimate wedding with a big overseas honeymoon instead so they travel and see the world before life's commitments (eg mortgage and kids) make that option less likely to happen, its not a bad idea actually. I'm just trying to give you a heads up, open your mind, be ready to re-evaluate whats important to both of you.
Life isn't over, not at all, its certainly different and its totally normal for some people to want to speed things up but its also perfectly normal to want to slow it down or change things a little or a lot. One thing we've learnt as family, as a couple is to be flexible, ever ready to alter plans because there's no point getting hung up on things, no one can control whats going to happen so we've learnt to relax and enjoy the little things a lot more.
I think you need support too, you know your self better than anyone and if your not coping as you'd like or expect, then please do what ever you need, to get through this fase, reaching out like this is actually a great way to start :-) we're very good listeners!
Cheers.........JJ
Welcome to our little corner of the weird wild web! :-)
You've found a bunch of really knowledgeable folks with all kinds of good tips on coping with this MeSsy disease.
Just know this isn't something anybody can control. The way my DH and I deal with it is to take it "One Day at a Time". I go ahead and work, take my bike rides, we raft, kayak, camp, etc., but we always have a "plan B" in case things go awry. I'm notorious for biting off more than I can chew (I'm the one with MS), and DH is good at providing reality checks. I made up my mind to live well with this disease, and I had it long (20+ years) before I was diagnosed. We raised a daughter, and now she's given us a grandson who I play with every Thurs. :-)
Bottom line - Enjoy your lives!
Cheers!
You've found a bunch of really knowledgeable folks with all kinds of good tips on coping with this MeSsy disease.
Just know this isn't something anybody can control. The way my DH and I deal with it is to take it "One Day at a Time". I go ahead and work, take my bike rides, we raft, kayak, camp, etc., but we always have a "plan B" in case things go awry. I'm notorious for biting off more than I can chew (I'm the one with MS), and DH is good at providing reality checks. I made up my mind to live well with this disease, and I had it long (20+ years) before I was diagnosed. We raised a daughter, and now she's given us a grandson who I play with every Thurs. :-)
Bottom line - Enjoy your lives!
Cheers!
Kellydiane....
I can really related to your situation (leaving out having more kids :)...
I finally met the man of my dreams (took me 40 years tho and had been a single mom for 18 years)..... Last year I was planning our wedding set for September 16th when in June I started having all the weird hard to ignore crap MS brings to us.... My primary expected MS pretty much from the beginning. Knowing we might be facing something like MS, I wanted to postpone the wedding... kept joking you would not go out and buy a used car that you knew might break down in a year (hey, I have a sense of humor, tho he did not find it real amusing)... he refused and we moved forward with our wedding. I did not get the diagnosis until November....
It does suck... but honestly with living a healthier life, starting a med as soon as possible and keeping positive, the outlook is not all doom and gloom... remove the bad habits... remove as much stress as you can... throw in some supplements.... keep moving.... do what the doctor says and your husband to be may very well still be coaching the soccer team in 10 years :)
I just started yoga... got the Wii Fit / balance board my neuro me to... been going out for walks daily... gonna take up horse riding again too...
I am a take the bull by the horns kinda person, got myself as educated as I could, read up on all medicines out there, even looking into an off label use of LDN for adding to help with the MS....
MS does not have to change your dreams... might alter then a slight bit...
Good luck :)
Jen
"My feelings are all over the place...angry, sad, hurt...but mostly just confused"
Welcome to the wonderful world of MS :-)
You don't mention what he's like now, physically. Does he have long term on going symptoms? Is he in a 'relapse' that may be short term?
I ask because it may inform how things will go. I had an episode when I was 30. It resolved and I did nothing further. I had another episode when I was 49. It resolved and I did nothing further. I had an episode this summer at 52. It did not resolve and I learned that all of these episodes were MS. I was diagnosed with secondary progressive MS.
I'm fine :) I am very much up and about and MS imposes very few limitations on my life!
MS doesn't mean the world is ending :-)
Kyle
Welcome to the wonderful world of MS :-)
You don't mention what he's like now, physically. Does he have long term on going symptoms? Is he in a 'relapse' that may be short term?
I ask because it may inform how things will go. I had an episode when I was 30. It resolved and I did nothing further. I had another episode when I was 49. It resolved and I did nothing further. I had an episode this summer at 52. It did not resolve and I learned that all of these episodes were MS. I was diagnosed with secondary progressive MS.
I'm fine :) I am very much up and about and MS imposes very few limitations on my life!
MS doesn't mean the world is ending :-)
Kyle
For those of us with MS and our friends and family, the uncertainty of the future can be quite scary, particularly upon diagnosis. I was 34; my wife and I were finally ready for a child, and so upon diagnosis we wondered if that was a prudent decision to make.
Its now eight years later, and my fears have not come to fruition. We moved to a new house -- we deliberately chose a single-level close to my work, which ultimately has proven unnecessary -- and I had a relapse. Another 18 months later we had that child -- and shortly afterward I had another mild relapse. But now it's been six frequently stressful years without a relapse, and my overall health seems as good or better than it did eight years ago.
Yes, your boyfriend should stop smoking, start exercising, and start one of the half-dozen disease-modifying drugs (DMDs), and there's no reason to wait. With patience and with his devotion to his health and to you, you both can have a long, fulfilling family life. Please read through literature and through message boards such as this one, and ask questions anytime!
Its now eight years later, and my fears have not come to fruition. We moved to a new house -- we deliberately chose a single-level close to my work, which ultimately has proven unnecessary -- and I had a relapse. Another 18 months later we had that child -- and shortly afterward I had another mild relapse. But now it's been six frequently stressful years without a relapse, and my overall health seems as good or better than it did eight years ago.
Yes, your boyfriend should stop smoking, start exercising, and start one of the half-dozen disease-modifying drugs (DMDs), and there's no reason to wait. With patience and with his devotion to his health and to you, you both can have a long, fulfilling family life. Please read through literature and through message boards such as this one, and ask questions anytime!
Hello,
Your feelings are normal. No Specialist will able to tell you how fast and or in which ways he will progress because no one knows. Each case is different.I was just with 200 people with MS and all of us had different disabilities. I have had MS for over 40 years and have a kind the treatments do not work for but I am still walking and active. Yes stopping smoking and a healthy lifestyle help in general if you tell him that he may do the opposite. Hopefully he will decide for himself that is the best way. I did not smoke but the minute someone said MS I adopted a healthier lifestyle because it was something I felt I had control of. I did not want any other health issues with the MS. But I made those choices.
Yes both of you as a couple have MS in a way. You can't fix it and some how you if you will have to come to peace with that.
He will have to adjust and it may take time.
People with MS can have families and lead normal lives it happens all the time. Others of us chose not to have children because of the unpredictibility and were fine with that. We also lead normal lives. I will not kid you this is an expensive disease and it lasts a lifetime.
This is hard on a couple at diagnosis. My husband went into denial and I wanted to know everything I could. We kinda pulled away from each other the first year. Keeping communication open is important. But also giving each other space when you need it. It is a delicate dance.
The National MS Society has a lot of information for families of those with MS. In some areas they have programs for the newly diagnosed.
You need support for yourself. My husband has learned that. He had a coworker with MS he would talk to. He was very scared and sometimes angry because it was about me and my disease.
Alex
Your feelings are normal. No Specialist will able to tell you how fast and or in which ways he will progress because no one knows. Each case is different.I was just with 200 people with MS and all of us had different disabilities. I have had MS for over 40 years and have a kind the treatments do not work for but I am still walking and active. Yes stopping smoking and a healthy lifestyle help in general if you tell him that he may do the opposite. Hopefully he will decide for himself that is the best way. I did not smoke but the minute someone said MS I adopted a healthier lifestyle because it was something I felt I had control of. I did not want any other health issues with the MS. But I made those choices.
Yes both of you as a couple have MS in a way. You can't fix it and some how you if you will have to come to peace with that.
He will have to adjust and it may take time.
People with MS can have families and lead normal lives it happens all the time. Others of us chose not to have children because of the unpredictibility and were fine with that. We also lead normal lives. I will not kid you this is an expensive disease and it lasts a lifetime.
This is hard on a couple at diagnosis. My husband went into denial and I wanted to know everything I could. We kinda pulled away from each other the first year. Keeping communication open is important. But also giving each other space when you need it. It is a delicate dance.
The National MS Society has a lot of information for families of those with MS. In some areas they have programs for the newly diagnosed.
You need support for yourself. My husband has learned that. He had a coworker with MS he would talk to. He was very scared and sometimes angry because it was about me and my disease.
Alex
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