new and numb
Hi my name is esther, my husband Pete was diagnosed with ms two weeks ago, I'm 33 him 39..we,re still waiting for more test results to know what type he has...I'm heartbroken and scared and feel toatally out of control, trying to be as supportive and helpful as i can be but emotions are everywhere, thought this might be a good place to start so "Hi"
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Hang in there! The first few weeks are scary. Check out the National MS Society's website. It will give you a lot of information. -
Hey Esther! My name is Julie and I am in the same situation sort of. My husband was diagnosed in July of 2010. He's 41 (as of today) and I am 35. It's a hard pill to swallow but educate yourself on it, say a lot of prayers, and just be as supportive as you can be! There are times that I feel broken into a million pieces on the inside but am able to hold it together for his sake (and our kids) and just push on through. We were able to join a local chapter of a MS Support Group which was very helpful for us. Maybe you can look into something like that.
Anyhow...best wishes to you and yours! Maybe we can encourage one another along the way on this forum. I am sure there are many others just like us.Comment
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Welcome, esther! It may be too soon to know which type of MS your DH has. The types have some different sx, like RRMS has relapses and remissions. and PPMS has neither of those. So it may take time to find out what his MS is like.As far as possible without surrender, be on good terms with all persons.Comment
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Hi, sorry you have to be here but welcome.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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Hi and welcome! Sorry you are here, but you're not alone.Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.Comment
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many thanks
Thankyou for all the introductions! Julie, would def like to stay in touch, are u on facebook, my fb username is Esther Connolly.
So we just got back results of test to see if pete would be at risk for pml if he took tysabri and test came out positive....our md would still like to put him on tysabri but we are leary due to this possibly leathal side effect, she also mentioned gelenia but it seems so new and so much testing involved while on it...we spoke of other meds mainly self injection but i don't feel very educated on those meds...anyone out there that feels up to giving their experience on any of these meds would be much appreciated or advice on what route to take with someone newly diagnosed, untreated
thanks in advance
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Have you looked at the Medications message board? I'm sure you could get answers to questions there.
The National Multiple Sclerosis Society (website: nmss.org) has a lot of information on treatments, and lots of other things, too.As far as possible without surrender, be on good terms with all persons.Comment
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Hi there Esther
Welcome. I know its scary as all get out right now, and trust me, you and your husband are in shock. You need to take very good care of yourselves right now. Get the sleep you need. Don't skip eating, stay hydrated, and above all, be with people who are supportive and willing to help out. The first year is the weirdest and hardest. Don't let your doctor push you in to ANYthing you aren't comfortable with. My husband and I decided against Tysabri because as far as we're concerned, the risk of dying really isn't worth the positives. Not when there are other meds out there that may be just as affective. It can take some time to figure out which med is best for your husbands MS. Know this: Everyone's MS is unique, and individual to them. No one's acts the same as the next persons. There are similar patterns, but that is it. Don't let anyone tell you different.
I have a Fb group I've just started, called MS-ing Around, if you would like to join. It's a place I've created as a start, where people can go to just find other people with MS or with a spouse or child with MS. I will be posting things up there, for information, or just to help cheer people, and I'm often online to chat.
I've only been officially diagnosed for three years, but medical records prove I've had my MS at the least 5 to 8 years, possibly more. But its only been at the worst since 2008. That's why I say, accept that you guys are in shock, and don't let anyone put any pressure on you. This is a big deal, but its doable, and you are strong enough to deal with it.
I will look forward to possibly chatting with you, or checking on you here.
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