New and Scared

[Tigergal]

I am new here and feel like my life has just been turned upside down. I feel selfish for thinking of myself when my DH is who may have MS. I am very scared for our lives and our future.

My DH was diagnosed with Graves disease 3 years ago and had his thyroid radioactively removed. Ever since then he has had more sx that look like MS. He had a MRI 2 weeks ago and was given the results on Thursday. I was not there because I did not even realize that they were doing tests to rule out something as big as MS. I feel very guilty for not being there. The Dr said he probably has MS. My DH does not have a very good rapport with this neurologist so he did not get alot of info from him. The Dr. wants to do more blood work and a spinal tap. My DH is not sure about the Spinal yet but will have the additional blood work done.

The past 3 days have been a roller coaster. People keep telling me that sometimes the side effects of thyroid meds mimic MS. My DH has what he calls tremors, he has anxiety, but his main sx is dizzy spells. When I read the material about MS I feel like he does not have MS but then I convince myself that I am in denial. My DH has not officially been diagnosed. My DH takes Levoxyl for his thyroid. He also takes Celexa for anxiety and Singulair for allergies.

We have 2 daughters that are 6 and 4. I do not want my DH to be in pain and I am very worried about the way this will change our lives. I worry that this will damage our marriage. I am scared that I will start to resent him because he will not be able to help me with housework and parenting. I am scared that my daughters will be burdened by having to grow up with a sick parent and it will limit their childhood(i.e travel and activities that they can participate in). I worry about the financial devastation. I start crying when I think about all of this. Earlier today I was questioning what I did or we did to deserve this punishment. I feel very helpless at this point and when I am not feeling helpless I am looking for another explanation for his sx's.

Please don't judge me and think I am selfish...I love my DH so much but I am very scared about the prognosis. I don't even think I understand what this disease will eventually do to my DH. Any words of wisdom will be greatly appreciated!

[Madeleinemom]

Until your DH has a definitive diagnosis of MS, you are guessing and worrying over somethings that is not yet defined.

Do I understand your thoughts and the despair these thoughts can bring - absolutely - it is human.

Let's say that your DH is, in fact, diagnosed with MS - that would not mean that your lives as you know them are coming to a screeching halt.

There are meds our there to stop the progress of Remitting Recurring MS (which the majority of MSers have 'RRMS'), and other meds to help with symptoms.

I know several people who work, raide a family, and are phsyically very active - with MS.

Hang in there!

[Madeleinemom]

First of, pardon my typos in the above post

I'd like to add the following, which (hopefully) will make you feel a bit better:

Before I was diagnosed, my DH would complain about my resistance to go for walks (I was having increasing issues with gait, balance and endurance). He'd more or less call me a lazy couch potato

He is not a mean, unkind man - not by any stretch of the imagination, he just thought that his wife was ... well ... getting lazy.

Once I was diagnosed, he apologized (still does), for having misread symptoms as an attitude/behavior change on my part.

Looking back at it, I can totally understand how he could come to the conclusion he did - we didn't have the facts yet, so he demonstrated a normal, human reaction.

[domi6300]

Tigergal,

I'm writing to you from the opposite POV here, as I am the one in my marriage diagnosed with MS. I know it's scary. But I guarantee you, this whole process is just as scary for your husband. In fact, my understanding is that, for many men, the idea of not being able to provide for a family in a way that's considered satisfying can be extremely devastating.

I think the most immediate response to what you are feeling is to, if you haven't already, talk to your husband. Give him the chance to share his fears, and share yours as well. The journey toward finding answers and, if necessary, living with MS is scary and frustrating, but is made easier with effective communication.
If he does in fact have MS, you will need to work together to find solutions to everyday problems, and you will need to learn to compromise for his health and your sanity.

The next thing I would encourage you to do is to educate yourself. One of the scariest things about MS is that it is complex and confusing. Arming yourself with knowledge as possible will help to alleviate unnecessary concerns, AND allow you to better advocate for yourself and your husband if necessary.

That said, this is not a done deal. I agree with previous poster: try to avoid running through "worst case scenarios" until you know for sure what you are working with.

Good luck to you! If it turns out you are dealing with MS, you have found a terrific source of support in this forum.

[sunshine008]

hi

I"m newly dx'd, a few mos ago. MS and how it affects you mentally will be up to you I think, as well as your husband. Also he will need you to be his best friend now bigtime. Just be there and listen to him, be his friend support him.

Try to keep in mind MS is not cancer. I do the same stuff Iv'e always done since diagnosed. I'm a bit more tired, and I take my breaks yet i'm still the same me.

Also there are medications out there now that weren't out there long ago, medications to help with the symptoms, medication for his anxiety.

My kids know of my MS and well to be honest at first they were shocked yet now their back to being there annoying selves lol.

It'll be ok if it is MS,just hang in there try not to project. That's the worst thing you can do right now I think. Take it one day at a time, afterall that's how life happens.

good luck, and yes you've found a great place for support and encouragement. I'ts nice to see so many spouses of those dx'd in here that care so much.

[Jules A]

Yeah definitely wait until you know for sure before you start being too consumed with the MS thing. Get a neuro you like. If it is MS he might be able to be diagnosed with just MRI and not the invasive spinal tap.

The best advice I could give someone in the face of a new MS diagnosis is to get your financial affairs in order. If changes need to be made so the person with MS can work at a less physical job or their partner needs to make changes to their career to possibly be the breadwinner some day now is the time to start.

It is what it is so hoping for the best but preparing for the worst is crucial in my opinion. Good luck and I pray it isn't MS.