At a loss

[Tigergal]

So my husband is in the process of getting a MS diagnosis. He had a MRI and the neuro said he had "fluid" on his brain and he ordered a lumbar puncture. We will get those results on Wednesday. I am dreading the outcome.

Today I thought I should be open with my husband and I told him that I was scared about the future. I told him that I had recently wished that I would die in a car accident or some other way just because I was so overwhelmed. I had kept this from him in a effort to protect him from the stress. But felt that he should know and also I hoped that by sharing our feelings it would draw us closer together.

After this he was not comforting but proceeded to tell me that I could divorce him if I wanted. He said it in a hateful way so it hurt my feelings. I do not want to abandoned my husband in the middle of this I just want to unite and help each other. I know he is scare and angry too but I do not know how to talk to him without upsetting both of us.

He is convinced that it is MS and I spend the majority of my time searching for another explanation. I am realizing more and more that if this is MS that people typically do not want to talk about hard topics like this. And even thought this is not happening to me I feel like I am carrying the weight of the world. We have 2 daughters ages 4 and 6 and I want to maintain as much normalcy as I can for their sake.

Any advice on how to proceed is appreciated. I know I need to wait for the official diagnosis but after hearing my husband say that he is sure this is MS I cannot stop visioning our horrific future! Thanks!

[hunterd]

tiger, i hope it`s not ms. i worked with a guy that was dx at 18, he is now 46 and shows no signs of any disability other than a very slight limp. you never know what the ms will cause (disability wise), so there`s no use worrying about it (easy for me to say). but i`ve been there and did my share of worrying. some of my fears materialized and some didn`t, so don`t waste your days away, once they`re gone you can`t get them back! good luck.

dave

[lemstar]

tiger--
I agree with the previous poster--even if the diagnosis is MS, it does not mean he will go downhill fast, or even at all. I have had MS for 31 years, and I work and have kids and function fully. So first of all, "don't go ugly early" (thats a saying I learned from a friend, and it has helped over and over). No one ever knows what the future brings, and its best just to try to greet each day with gratitude for what we have, and not second guess what horror is next. There are plenty of things to be afraid of out there, and no guarantees for anyone anyway....

Secondly, I think you need some support yourself. You are dealing with a serious issue, and yes, you need support. Unfortunately, your husband is unavailable for that kind of support right now. So you need to find it elsewhere. There are support groups, or therapy, and coming here too, where people understand. If you are in this for the long hall, and I am guessing you are, please find some support system so that resentment and fears just don't keep building up....
Hang in there, and come back here as often as you need it. We all "get it" here.....

[Scooter24]

I'm sorry but if my wife told me what you told him I would have reacted the same or worse, He is going thru alot himself and now you say to him I wish I could die rather than have to go thru this with you ???? How would you have reacted if the shoe was on the other foot ? I agree that you may need some support yourself. Sorry if I offend you I am just not the type that worries about political correctness.

[Spydre]

I have to agree with Scooter

I'm sorry, but I have to agree with Scooter. Yes, my diagnosis freaked my husband out, but we did research on it together. He never felt like he had to shield me from stress, I just quickly had more problems than I bargained for as a side effect of the meds - but a year later I was doing a bit better after changing meds.

I think, maybe, you could be trying to shield your hubby from things he may not need shielded from. Take it one day at a time, and get some help for your problems, but don't try to shield him from day to day life - it can come back and bite you in the butt.

I like the advice that someone else told you on another thread - go with him to his next appointment. Also, I've done searces, and I still can't find any links between fluid in the brain and MS - most links are to cerebrospinal fluid, which references the spinal taps done, and then one of the top search results was your original thread here. I think you may be getting something lost in translation. It was 6 months before MS was suspected in me, and I got my actual diagnosis.

[Tigergal]

I'm sorry but if my wife told me what you told him I would have reacted the same or worse, He is going thru alot himself and now you say to him I wish I could die rather than have to go thru this with you ???? How would you have reacted if the shoe was on the other foot ? I agree that you may need some support yourself. Sorry if I offend you I am just not the type that worries about political correctness.

Thanks for your input. I have been trying to handle this on my own and protect my husband since all of this began.

Maybe that was not the best thing to say but when he is not expressing himself to me it is difficult to understand how he is feeling. I by no way want to sound like I have it worse than a person with MS. I just think the partner/caregiver is often overlooked and bears the brunt of all the emotional stress. I am supposed to put on a happy face and pretend that life is grand when all of my dreams and visions of my future are being thrown away too.

Please don't take offense to my comment either just think you should step back and realize that I was being honest with my husband about how I felt and really wanted comforting. I am expected to comfort him for the rest of his life through this disaster yet I do not deserve any reciprocation.

[Tigergal]

I'm sorry, but I have to agree with Scooter. Yes, my diagnosis freaked my husband out, but we did research on it together. He never felt like he had to shield me from stress, I just quickly had more problems than I bargained for as a side effect of the meds - but a year later I was doing a bit better after changing meds.

I think, maybe, you could be trying to shield your hubby from things he may not need shielded from. Take it one day at a time, and get some help for your problems, but don't try to shield him from day to day life - it can come back and bite you in the butt.

I like the advice that someone else told you on another thread - go with him to his next appointment. Also, I've done searces, and I still can't find any links between fluid in the brain and MS - most links are to cerebrospinal fluid, which references the spinal taps done, and then one of the top search results was your original thread here. I think you may be getting something lost in translation. It was 6 months before MS was suspected in me, and I got my actual diagnosis.

The problem is that my husband is not uniting with me and I am the only one researching this disease and educating myself about it. I am obsessed!

So after all of this time I just felt horrible and overwhelmed and that is how I expressed myself. Sorry if it was the wrong thing to say but I would like to know how any of you would handle your spouse or partnering not talking about the MS and how it could affect your life. Had you not been willing to reseach the disease with your husband he may have become overwhelmed or stressed at the thought of being robbed of the person he loves and planned on having a full life with.

My husband does not talk about this and it is painful. I spend so many hours researching and looking for answers with NO support!

[Spydre]

The problem is that my husband is not uniting with me and I am the only one researching this disease and educating myself about it. I am obsessed!

So after all of this time I just felt horrible and overwhelmed and that is how I expressed myself. Sorry if it was the wrong thing to say but I would like to know how any of you would handle your spouse or partnering not talking about the MS and how it could affect your life. Had you not been willing to reseach the disease with your husband he may have become overwhelmed or stressed at the thought of being robbed of the person he loves and planned on having a full life with.

My husband does not talk about this and it is painful. I spend so many hours researching and looking for answers with NO support!

It's very likely that your husband is either in denial, or is terrified of what he would find out. It's pretty heavy, especially if your the breadwinner.

When they first noted the lesions in my brain, my doctor basically told me I was in flare atm, but we'd watch it to see what developed. Basically, he gave me the diagnosis of CIS, even though he didn't tell me. I was absolutely terrified. I came home, did a tiny bit of research - mostly on what else the lesions could be - but didn't do a whole lot of research on MS itself, because I was terrified of what I'd find out. I was the earner in the family. When my next exacerbation occurred six months later, once my doctor did the MRI and said that the lesions were enhanced, so he was pretty sure I had MS, even then I didn't do much research - it wasn't until my spinal tap came back positive and he told me he wanted me to look at the available medications and give him feedback on what I would want that I actually started making an effort to do research on MS. That was around the same time my husband started researching - he didn't look around until my doctor said, "You have MS" - a friend of his in an online game had MS as well, so he got a lot of information from her.

It could very well be that your husband is going through all of this in his mind - the what ifs, the what will happen if I have to quit work, etc. Or he could just be in denial about either what COULD be MS, or the effects that it MAY have on him.

[stanci31]

wait till the dr say MS do not stress hard to do instead of saying it. my husbund sayes everybody expect me to be a marter they do not want to be the one .everybody is trying to be positive but really life is not alwayes positive even if MS is not your roomate that is how he calls it.
yes he also needs support so even if you think you can handle it get a somebody to talk to. friend ,professional ,
groups are to positive his words. professional the best they know MS or can learn about it -it is their job to make you better
I say it could be worse we could be in Sibiria withouth cigarettes, and even if smoking is not your addiction you can change it for food. all the best to you

[angelgirl7]

In this thread you have referred to MS as being "horrific", a devastation to your dreams and a "disaster".
I don't know you at all, but something tells me that this is not a one shot type of deal. If you were my friend, and I felt this from you, I wouldnt say a word to you about how I feel either. I can only wonder how your husband feels.
Your mind is already made up about what will happen to the future of your family - why not just buy a casket now? How do you expect to live when all you are preparing for is death? How you go into this thing will affect how you deal with it.
For your sake and the sake of your family - I hope I am wrong and that this is only your shock talking.