Got the diagnosis

[Tigergal]

I have been posting alot about my husband and his tests for MS. Well today it was confirmed! The neuro said the dreaded "You have MS". I am very sad that it actually turned out to be this.

My husband is not talking about it much what what he does say seems to be more positive than I expected. I completely fell apart the minute I was not with him.

I feel like we have been robbed of our lives. Even though I do not have MS, as his wife I am affected too (emotionally). I am sure I will be on these boards alot in the coming months for support. I doubt that my husband will be open enough to come on here but I will make the suggestion.

I wish I did not have to come to these boards but I think that there are alot of great people on here to help us through this part of our lives!

[lemstar]

Tiger--
I have been following your posts, but don't remember the severity of your husband's symptoms?

You said you feel your lives have been robbed. Is that because of how your husband is feeling/functioning? Just because you got the label "MS", does not mean you are both doomed. I have had MS for 31 years, and am still functioning pretty fully.

Attitude is EVERYTHING. Well, almost everything....
Hang in there, and "don't go ugly early"....

[Jules A]

Sorry you have to be here.

[webbles 989898]

I remember the day I found out. Thought it was a fairy routine dr visit so my sweetie did not go with me. By time he got home I was a basket case. I told him to get out while I was still able to accept it. He calmed me down and has been in this with me ever since. Officially 11 years, unoffically 16 years. Hang in there. Some times it is not as bad as you think it will be.

[Spydre]

I'm sorry that you got the diagnosis. Did you ever find out what it was with fluid in the brain?

What kind of symptoms is your husband having, and how severe are they right now?

[KarenR]

I'm glad your DH got a diagnosis so he can begin treatment. Sorry that it's MS, though.

However, an MS diagnosis does not have to "rob you of your lives".

Have DH begin treatment, eat well, stay cool, exercise to the best of his ability...

and continue to love each other.

The first year or two may be rocky as you are met with new challenges and symptoms and feelings.

Personally, if it wasn't for my DH's never-ending love for me and his enormous sense of humor, my MS would be near unbearable, especially in the first few years after dx.

Come here often and vent. Invite DH to do the same.

Be well,

[bulldogman]

I am sorry for your husband's diagnosis. Encourage him to join us here there is alot of great information. Take it one day at a time try not to let MS take over your life. Take care.

[SNOOPY]

Tigergal,

I am very sorry the diagnosis was MS

[hunterd]

hi tigergal, sorry about the news! remember, for every door that closes, a window opens! don`t despair, while it won`t be all roses, every cloud has a silver lining! good luck.
my profile has my e mail if you want.

dave

[TundraGirl]

Hi Tigergal,

Glad you are here, but sorry for the reason. I just wanted to let you know that an MS dx doesn't mean your lives are "doomed". I was diagnosed in 1998 at the age of 19. Since my diagnosis, I have only had one major relapse (in 2003). I have been on DMDs since my dx (Avonex, 98-03; Betaseron, 03-10; Rebif, 10-present).

I am still working full-time and try to stay active. I work hard to not let MS define me now. There are no guarantees that my course will stay mild, but I think it is important to enjoy the good times as they come.

[Lexie]

I always think of people who have been diagonosed with a terminal illness and thankful I "Only" have MS. It keeps me going most of the time but it's hard because we look all right on the outside and no one sees what's going on inside. It's a fight for me that only a few people know. Even if they know you have MS they don't understand. Remember that you are your hubby's best advocate and you have to fight it together. If it were not for my hubby of 42 years I would have probably thrown in the towel by now. Come back often!

[Tigergal]

thanks all

My husband said several times last night to other people that he was just going to keep going like he has been. So I do find that refreshing and I hope that he will fight this with all that he has.

He is still very able. The neuro said we caught it early and my husband will probably start Copaxone soon. His main symptom is dizzy spells. But I never even know when he is having them.

I am thankful for his positive outlook and I hate that I feel so negative. I of course do not let him know that I am down about this. I am really worried about my depression over this because I am struggling with the why me and why does God hate us so bad!

I worry about all of the things this make take from us like him being able to be a big part of my daughters lives and their activities all the way to will he be able to walk them down the aisle and dance with them at their wedding. It makes me sad that he may not be able to be an active granddad as I once envisioned. I know this is a long way off but it still saddens me and makes me feel like we have been robbed.

I am hoping for the best but just scared of the unpredictable issues that this disease presents.

I appreciate all of your nice comments and as I grieve I find comfort in your encouragment in hopes that I can reach a better place.

[cosake]

Tigergal - sorry that you are here, but glad you have the MS diagnosis. No diagnosis at all would be much worse.

You are right that you are grieving and that is a perfectly normal reaction. It is a different process for everyone.

I was surprised to get my MS diagnosis after a bout with optic neuritis. Here I thought I was going to be blind the rest of my life and it turns out I have MS ! I think the MS is better than being blind, but who knows ? And I always think of all of the people who have it worse than I do; such as people with cancer, or who lose their loved ones in combat, etc. There is always someone who has things way worse than I do, so I think I shouldn't sit around and complain about it.

I dove in and got books and read everything I could online about MS right after my diagnosis. I am a control-freak, and not having control over my body/MS was going to drive me nuts. So my way of recovering control was to learn everything I possibly could about MS and become knowledgeable about it. I have a brief pity party from time to time and then pick myself up and keep moving on.

I have had a fairly mild course of symptoms until about two months ago and had my first real flare with muscle weakness in right leg and arm. I started on Copaxone last night and hope it continues to go well.

I do rest more now, don't volunteer as much, and I'm careful of the hot weather. Other than that, I live a pretty normal life.

My husband and I do talk differently about some of our future plans. Such as wanting to put on an addition and making sure that the floor is level instead of a few steps down, and that there is a way to put up a wall on the addition to make it into a first floor bedroom if I ever can't do the stairs. You just "tweak" how you think about some things differently.

And, I don't put off as many things as I used to, because I do know that from one minute to the next I could have some MS symptoms. And I know that it is completely unpredictable and I can't control it - I can only try to make things better by taking action with my injections.

Is your husband diagnosed as RRMS ? If so, that means that the majority of his symptoms will come and go. And a treatment can help cut back on lesion load and symptoms/flares.

Take your time to grieve - I know that my husband is having a hard time with my MS - probably harder than I am.

Take full advantage of the support that you can get here on this board. I practically "lived" here when I first got my diagnosis, and still spend alot of time here. Sometimes it is better to learn from others' real life experiences than something a doctor will tell you.

Take care of yourself.

[Lexie]

No doubt about it "THIS IS HARD" I think it may be harder for men than women because they feel that it is their job to take care of everyone in the family. I try not look at the future but just take one day at a time. Of course it is much different for me as just turned 61 years old and my children are 35 and 39. Although they still need me and I talk to them every other day, it's not the same as having children who are not grown. My youngest granddaughter is 7 years old but I hope to be there for her wedding. Prayers will continue for strength for both of you!

[Tigergal]

I'm sorry that you got the diagnosis. Did you ever find out what it was with fluid in the brain?

What kind of symptoms is your husband having, and how severe are they right now?

The neuro said that there were leisons but my husband insists that he originally called them fluid. I know memory is an issue with MS but I feel confident that this crazy neuro probably misled my husband. Which is why we are getting a new neuro ASAP!!