Aa
I was enjoying Limbo Land
I didn't realize how nice limbo land was till I got my diagnoses yesterday. Confirmed with a spinal tap that both my Dr. and I were convinced would come back negative. My MRI's were inconclusive and my symptoms were few and not typical. I'm almost relieved to know but kind of devastated. I'm a newly wed and I think my wife is even more shocked. We're coping and trying not to let us get it down. I'm otherwise healthy and relatively symptomless. My Dr. and I have talked at length about whether or not to go immediately on medication or think it over. She has called for another MRI to see if there are any changes since April. She recommended Copaxone for my case but I haven't started looking for information although I know it is an infection daily.
Just my thoughts for now. I know this forum is very supportive and I've posted before. Just thought I'd post an update. Hope all of you are well.
Just my thoughts for now. I know this forum is very supportive and I've posted before. Just thought I'd post an update. Hope all of you are well.
It sounds like you and your wife will do just fine with working through this news = lots of love and laughs goes a long way. And then you hit the education part - learn all you can and take the mystery out of this. The more you know, the less you have to fear. In the meantime, be sure to come back around here and feel free to bring the wife, too! We have great forum members who are listeners, give great advice and have been in your shoes.
I'm glad you found us.
Lu
I'm glad you found us.
Lu
Hey there!
Fellow neighbor here in NJ. I wish you well while you weigh out starting therapy now or not.
All the studies indicate early dx and treatment can greatly change the course of MS. Consider lifestyle when weighing out those advantages, etc. i.e., if you are the type who would not stick to a once daily injection, then look at the alternative which are once a week Avonex, 3x's a week Rebif, or every other day Betaseron.
If it's not mentioned, you can alway go to a newly dx'd seminar too. Each pharm company offers these and they are live meetings with at least a neurologist. You don't have to be decided to attend. It's great for spouses to attend as it puts each on the same page when learning about the beast.
Calm is a great place to be :) glad your there!
-Shell
Fellow neighbor here in NJ. I wish you well while you weigh out starting therapy now or not.
All the studies indicate early dx and treatment can greatly change the course of MS. Consider lifestyle when weighing out those advantages, etc. i.e., if you are the type who would not stick to a once daily injection, then look at the alternative which are once a week Avonex, 3x's a week Rebif, or every other day Betaseron.
If it's not mentioned, you can alway go to a newly dx'd seminar too. Each pharm company offers these and they are live meetings with at least a neurologist. You don't have to be decided to attend. It's great for spouses to attend as it puts each on the same page when learning about the beast.
Calm is a great place to be :) glad your there!
-Shell
I am so sorry about your diagnosis. It must be a mix of feelings to come out of limboland into MS-land. It sounds like you have a supportive family, which is so helpful. I think you will find lots of great support here!
""they do not tattoo the letters M and S on your forehead.""
They don't? They lied to me! Bas**rds!
Learning you have MS is surely an eye opener. But it's neither an express ride to the rest home nor a death sentence. As a newly wed with a teenage brother I'm assuming your in your twenties. It's likely you have a long, active future ahead.
I had my first relapse at 31. I spent the next 20 years pretty much doing anything I wanted. I was diagnosed a year ago and I'm still doing pretty much everything I want to.
As for who to tell and when, it's a personal decision. I told my family and my boss immediately. I wanted to assure my boss that I was really going to doctors' appointments all those days and not out interviewing :-) The rest of the world found out about 4 months after my diagnosis. I participated in WalkMS and started my fund raising by telling everyone I knew that I had MS and that they should send money! They did :-)
I'm moving to Great Neck in a in October!
Kyle
They don't? They lied to me! Bas**rds!
Learning you have MS is surely an eye opener. But it's neither an express ride to the rest home nor a death sentence. As a newly wed with a teenage brother I'm assuming your in your twenties. It's likely you have a long, active future ahead.
I had my first relapse at 31. I spent the next 20 years pretty much doing anything I wanted. I was diagnosed a year ago and I'm still doing pretty much everything I want to.
As for who to tell and when, it's a personal decision. I told my family and my boss immediately. I wanted to assure my boss that I was really going to doctors' appointments all those days and not out interviewing :-) The rest of the world found out about 4 months after my diagnosis. I participated in WalkMS and started my fund raising by telling everyone I knew that I had MS and that they should send money! They did :-)
I'm moving to Great Neck in a in October!
Kyle
Eddie -
Playing catchup with weekend posts... I am sorry you got the diagnosis, but now that you do, let the rollercoaster of emotions for a few days... its perfectly normal and acceptable and healthy to feel sad, angry and optimistic all in a range of 5 minutes.
I am still a newbie too, was diagnosed in November. I had been dealing with diagnosis nightmare since June before... in between those months, I was married to the most wonderful man in the world who I suggested we postpone the wedding til we knew what we're dealing with. He refused and said it would not make difference. So I understand you telling your wife now is the time to get out.... hopefully she gave you 'that look' and even a slap to the back of your head before dismissing your suggestions :)
There is a ton of reading... I had done all my reading in the many months leading up to diagnosis, so had myself fairly well prepared to deal when the bomb fell.
Selecting your DMD is a personal choice and they are all effective and work in their own way. Its not so much you need to decide which works best, its more what fits into your lifestyle best. I have one of those super immune systems, so I did want to comprimise how well I fight off all the little bugs and flu. I opted for copaxone which does not weaken the immune system, so big plus... down side its a daily shot. But its a tiny needle and the uncomfortable injection side effects lessen in time, so was a package deal I can live with. But, its so very much a personal choice and what you can handle. Others will swear by rebif and how much they prefer that treatment.
Once you get yourself out from that first crushing wave that knocks you off your feet, there are so many positive proactive things you can do so you don't feel like a victim or helpless.. consider diet modification, supplements, start a yoga type program to help keep the flexibiity you have now.
There are lots of support groups, both online and in person. Also for your wife, so she has others to talk to and support her in supporting you.
Much like every type of challenge in life, there is a series of emotions... you'll be at the fight response soon... when you get there, embrace that feeling and make your battle plan.... and please always believe you are the biggest advocate for your health, don't let anyone convince you of something that just does not feel right for you!
And huge congrats to being here and posting, be very proud of yourself for reaching out and looking for the support and suggestions!!
Hugs to both you and your wonderful wife :)
Jen
It is hard to tell people they do not know what to say. The MS Society has great literature on telling people about your MS friend's family, work, etc. Each situation is different. My husband did not tell his family for the longest time, like years. It was the same with the Cancer. People really do not know how to respond to that one. With both diseases my husband and I have gotten so much support from everyone. It is explaining MS which is the hard part.
You can be optimistic. You picked a good time in history to have MS they have mad so many advances since my final diagnosis in 2009. Sort of like it is better to have Cancer now than it was even ten years ago.
My husband and I have had more adventures since I was diagnosed with MS. We do not take things for granted or each other. We have our bucket list and we are doing it. I started a savings account when I was diagnosed because my husband wants to do this bike ride from Paris to Brest to Paris that is held every four years. So every week we put a little away so we can make this trip.
Yes it is a shock and there will be adjustments. The MS Society has resources for care givers and couples. We got to do this couples workshop on communication. Some Chapters do it telecoference others as a workshop with a marriage counselor. basically it teaches you communication skills. It helped us a whole lot. Keeping the lines of communication open is important. Being able to support each other. My greatest lesson has been there are two of us with my MS and Cancer. My husband is having a tougher time some times than I am. My brother even has a tough time with it. I am his only relative. He has said to me I do not know what to say to you. He calls all the time and we just talk.
Sounds like you have the most important thing a sense of humor. I make a joke when it gets intense when I talk about it to family or friends. My husband and I joke a lot. Well an a wife who will stick with you.
You two take care.
Alex
You can be optimistic. You picked a good time in history to have MS they have mad so many advances since my final diagnosis in 2009. Sort of like it is better to have Cancer now than it was even ten years ago.
My husband and I have had more adventures since I was diagnosed with MS. We do not take things for granted or each other. We have our bucket list and we are doing it. I started a savings account when I was diagnosed because my husband wants to do this bike ride from Paris to Brest to Paris that is held every four years. So every week we put a little away so we can make this trip.
Yes it is a shock and there will be adjustments. The MS Society has resources for care givers and couples. We got to do this couples workshop on communication. Some Chapters do it telecoference others as a workshop with a marriage counselor. basically it teaches you communication skills. It helped us a whole lot. Keeping the lines of communication open is important. Being able to support each other. My greatest lesson has been there are two of us with my MS and Cancer. My husband is having a tougher time some times than I am. My brother even has a tough time with it. I am his only relative. He has said to me I do not know what to say to you. He calls all the time and we just talk.
Sounds like you have the most important thing a sense of humor. I make a joke when it gets intense when I talk about it to family or friends. My husband and I joke a lot. Well an a wife who will stick with you.
You two take care.
Alex
Thank you all for your support words, thoughts and ideas. I knew this forum was just the place to come for support from people who know the pain and confusion of a diagnoses. I am lucky to have a wonderful and supportive wife who I can discuss things with and share my crazy thoughts with.
My wife and I are still in the shock stage I think. We've spent the past few days just doing what we normally do with the occasional "Oh yeah, that happened and it *****" conversation. We're oddly optimistic at this point. I think because it's not yet right in our faces and I've been feeling crappy for a whole year so I think we're used to it.
I did register with the MS society (Thanks Jane!) and I'm looking forward to getting some more literature. Although there is more to read online than I could have ever imagined. So many opinions and experiences, I just wish I could read and absorb them all instantly.
Alex - You're absolutely right, this isn't the end of anything. I did feel very suddenly like a burden and made inappropriate jokes (defense mechanism!) about how she could leave now if she wanted. That didn't seem to help any but gladly she opted to stay after I said that.
I do feel strangely calm. I think I was so panicked this entire past year, so much so that I needed Xanax to get through some it. Not knowing is probably the worst part but now you're right, I know my enemy, I know what I have to do and almost how to do it. I remember a year ago when I first had symptoms thinking "What if this is MS?" and the panic that followed (especially after googling, what a mistake). Now at least I know and I'll move on.
Did any of you have trouble telling friends? I told my family the very next day and my teenage brother felt so bad he mowed my lawn for me. (Fine by me!) But otherwise they didn't know how to react, mostly I got "But you seem fine?" Which is true, I do look the same because if I understand correctly they do not tattoo the letters M and S on your forehead. Right? My friends on the other hand, I just don't know how to bring it up or what to say. We went out with them last night and a few of them knew I was seeing a Dr. last week and asked but we were at a bar and I didn't think it was the right place or time.
Anyway, thanks again for all the responses. It means a lot. I don't know where you all are but I live in Long Island, NY. Just for future reference.
Talk soon.
My wife and I are still in the shock stage I think. We've spent the past few days just doing what we normally do with the occasional "Oh yeah, that happened and it *****" conversation. We're oddly optimistic at this point. I think because it's not yet right in our faces and I've been feeling crappy for a whole year so I think we're used to it.
I did register with the MS society (Thanks Jane!) and I'm looking forward to getting some more literature. Although there is more to read online than I could have ever imagined. So many opinions and experiences, I just wish I could read and absorb them all instantly.
Alex - You're absolutely right, this isn't the end of anything. I did feel very suddenly like a burden and made inappropriate jokes (defense mechanism!) about how she could leave now if she wanted. That didn't seem to help any but gladly she opted to stay after I said that.
I do feel strangely calm. I think I was so panicked this entire past year, so much so that I needed Xanax to get through some it. Not knowing is probably the worst part but now you're right, I know my enemy, I know what I have to do and almost how to do it. I remember a year ago when I first had symptoms thinking "What if this is MS?" and the panic that followed (especially after googling, what a mistake). Now at least I know and I'll move on.
Did any of you have trouble telling friends? I told my family the very next day and my teenage brother felt so bad he mowed my lawn for me. (Fine by me!) But otherwise they didn't know how to react, mostly I got "But you seem fine?" Which is true, I do look the same because if I understand correctly they do not tattoo the letters M and S on your forehead. Right? My friends on the other hand, I just don't know how to bring it up or what to say. We went out with them last night and a few of them knew I was seeing a Dr. last week and asked but we were at a bar and I didn't think it was the right place or time.
Anyway, thanks again for all the responses. It means a lot. I don't know where you all are but I live in Long Island, NY. Just for future reference.
Talk soon.
There are such mixed emotions after diagnosis. Communication is crucial with a new diagnosis and a marriage. Also knowing each of you may react differently at different times and this is okay. My husband and I have survived my two years of diagnosis, my MS diagnosis in 2009 and my MS, my Cancer diagnosis and treatment this year. I have to understand he and I are not our feelings. I have to not get upset by how he feels. I have to think about how I express my feelings, which is not easy. It is important for him to have his support and his outlets. He like to ride his bicycle and I have to let him even is that means he is gone for 12 hours. If he does not have that outlet he can't cope.
Getting on an drug sooner than later is important. Progression happens with or with out symptoms. The daily injections if that is what you choose are not that bad. I felt like I was doing something. I also did other things for myself when I was first diagnosed like starting a hobby I wanted to do horse back riding. I got exercise and enjoyment at the same time. My husband I made a whole new set of friends at the horse farm. They have fun parties and my husband found people new to bicycle with amongst the folks out there. I can't afford a horse but that does not stop me from enjoying my lessons and barn. I tried a bunch of other things until something was really fun.
MS is not the end of anything it can lead to new things, New hobbies, new communication in a marriage, new friends. For us we have new friends other couples with MS and people through new hobbies. Every case of MS is different. You learn what your MS is like and how to read your body. I have actually had MS 47 years and I have a pretty good life now that I have to learn to adjust with each new change. Also do not get caught in the trap of feeling like you are a burden to your spouse because of the MS. This only makes most spouses feel worse. Many of us feel if only our spouse could have known this was coming. Most spouses would still choose us. There is a lot still to love. We are not our diseases anymore than we are emotions.
You two take care of yourselves and each other. Nobody wants MS but you can adjust to it.
Alex
Getting on an drug sooner than later is important. Progression happens with or with out symptoms. The daily injections if that is what you choose are not that bad. I felt like I was doing something. I also did other things for myself when I was first diagnosed like starting a hobby I wanted to do horse back riding. I got exercise and enjoyment at the same time. My husband I made a whole new set of friends at the horse farm. They have fun parties and my husband found people new to bicycle with amongst the folks out there. I can't afford a horse but that does not stop me from enjoying my lessons and barn. I tried a bunch of other things until something was really fun.
MS is not the end of anything it can lead to new things, New hobbies, new communication in a marriage, new friends. For us we have new friends other couples with MS and people through new hobbies. Every case of MS is different. You learn what your MS is like and how to read your body. I have actually had MS 47 years and I have a pretty good life now that I have to learn to adjust with each new change. Also do not get caught in the trap of feeling like you are a burden to your spouse because of the MS. This only makes most spouses feel worse. Many of us feel if only our spouse could have known this was coming. Most spouses would still choose us. There is a lot still to love. We are not our diseases anymore than we are emotions.
You two take care of yourselves and each other. Nobody wants MS but you can adjust to it.
Alex
Wow, Eddie! I'm sorry you have this cr@ppy diagnosis, but glad you have answers. You know your enemy's name, and now have tools to deal with it. I'm not sure why your neuro would hesitate to start you on Copaxone right away. All the latest research points to starting a DMD sooner than later.
I'm glad you have someone in your life who can be supportive and caring. Don't forget to have lots of fun, too. Even on days when I feel just awful, my DH and I laugh a lot! Stay active, eat good, pure foods, enjoy your new marriage, and just get out there and live.
Big Hugs,
Lisa
I'm glad you have someone in your life who can be supportive and caring. Don't forget to have lots of fun, too. Even on days when I feel just awful, my DH and I laugh a lot! Stay active, eat good, pure foods, enjoy your new marriage, and just get out there and live.
Big Hugs,
Lisa
Hi Eddie,
I am sorry for what you are going through. I was devastated when my neuro told me "I think you have m.s" last month--but it feels worse, somehow, now that I have a negative lp--limboland, if you will! I just want resolution.
On the bright side--you already have someone wonderful in your life who knows what you are dealing with--that can make all the difference. Also, now that you know you have m.s, you can name and attack your "enemy", and that might make a little difference?
Hang in there.
I am sorry for what you are going through. I was devastated when my neuro told me "I think you have m.s" last month--but it feels worse, somehow, now that I have a negative lp--limboland, if you will! I just want resolution.
On the bright side--you already have someone wonderful in your life who knows what you are dealing with--that can make all the difference. Also, now that you know you have m.s, you can name and attack your "enemy", and that might make a little difference?
Hang in there.
It´s not what I would have imagined ever that someone would be missing the limbo. I wanna know asap. But I´m staying (trying) patient and will be until this will be figured out.
I´m sorry though that you're going through this, it´s so normal to have mixed feelings about this. This is all very scary, but like you know every persons ms is so different and I wish you all the best on this journey.
Dagun
I´m sorry though that you're going through this, it´s so normal to have mixed feelings about this. This is all very scary, but like you know every persons ms is so different and I wish you all the best on this journey.
Dagun
Haha! Later in the day I found myself thinking about you again... One of the best things I did after I was diagnosed was go to the National MS Society and Multiple Sclerosis Association of America ("MSAA") websites and register with my email and mailing addresses. After you register they will send you info in the mail and great monthly magazines with more info and advice.
The MSAA also puts out webinars on various topics, and one is about choosing a DMD and managing your relationships with your doctors. I know you're already contemplating a specific DMD (I was in the same boat), but I still think there's a lot of great info in this webinar since it was created for newly diagnosed individuals: http://www.msassociation.org/programs/videos/SEARCH_webinar.asp
- Jane
The MSAA also puts out webinars on various topics, and one is about choosing a DMD and managing your relationships with your doctors. I know you're already contemplating a specific DMD (I was in the same boat), but I still think there's a lot of great info in this webinar since it was created for newly diagnosed individuals: http://www.msassociation.org/programs/videos/SEARCH_webinar.asp
- Jane
Hi Eddie. Please know you are not alone. I was diagnosed last December and was engaged at the time. We are married now. Some days it's harder for him than it is for me, because he loves me so much he can't stand to think of me suffering in any way. I think that's pretty typical for couples going through this.
I wish you the best in working with your doc to make the difficult decision about medication. Trust yourself and read up on the meds and what they do so you're prepared and can feel confident in the decision you make.
I take Copaxone, and there are several others here who do to. If you ultimately decide to take it, we will be here to support you and try to answer questions you might have. Also, the company that distributes it in the states (Shared Solutions) will send a nurse to your home to help you get started and has telephone nurses available to help as well.
Best,
Jane
I wish you the best in working with your doc to make the difficult decision about medication. Trust yourself and read up on the meds and what they do so you're prepared and can feel confident in the decision you make.
I take Copaxone, and there are several others here who do to. If you ultimately decide to take it, we will be here to support you and try to answer questions you might have. Also, the company that distributes it in the states (Shared Solutions) will send a nurse to your home to help you get started and has telephone nurses available to help as well.
Best,
Jane
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