Knocking at the door of MS

[MarzoMS]

I took my wife to the hospital tonight where she is facing the possible truth of being diag.'d with MS.....she is 43..can someone please prep me for what I am about to be involved in.  And we also have an 7 yr old son how do we explain it to him and what he should expect?

[HVAC]

The National MS Society is a good place to start. They have literature on how to tell children and for spouses. They have a free book for the newly diagnosed. They are there for people going through the diagnosis process. If you look them up on line and give them a call they are great. I was so lost when I was diagnosed and called and said "I do not know hat to do I was just diagnosed".

The main thing to know is this disease is not fatal. Not every symptom happens to everyone with the disease and it is possible with support and adjustments to live a happy life. A year after diagnosis my husband and I live a good life.WE have hard times but we get through them.

Good luck to your family keep us posted.

Alex

[Sparkysarah]

I am always filled with a sense of warmth when a relative comes onto the forum and reaches out to others as a way of finding out more about MS and supporting their loved one.

So I just want to say welcome and the journey ahead is likely to be unpredictable and a bit like a rollercoaster. You have to take one day at a time and sometimes this means cancelling things at short notice. Above all beleiving in your wife and being able to say it is Ok if she is feeling so very tired that she cannot face going out.

However as others have said, she has not got the diagnosis yet, so try and keep an open mind and be prepared for the unknown and not necessarily getting all the answers you require.  We will be there to support you on your journey and also your wife if she feels able to come onto the forum also. Perhaps she may feel able to tell us how this all came about and what her symptoms have been.

Hope to hear from you again

Best Wishes

Sarah

[wiggles94]

Hi and welcome, but so sorry you are here!

AS the others have already said, we don't know where you are in the process with your wife's dx.  Is this the first time you have heard MS, or has this been a journey already?

What to expect if this is the beginning of your journey - it can take a long time and many MD visits, and ruling out many other things that it could be.  So patience patience patience is key.

But you sound like such a caring husband to be here, and seeking out support for your wife and family.  Try and educate yourself throughout this journey, and know that MS is a difficult dx for docs to make, and it's not an exact science!  You will probably find that you are asking many questions of your docs, and that is a good thing.  It helps them to think carefully about your wife!

Each person with MS has their own "MS."  So it's very hard to predict how it will affect your wife, if that is in fact what she has.  

Wishing you and your family the best of luck.  Please let us know how it goes!  This is a great site for information and support!
Carol

[sllowe]

Hi there,

I think too she must have such an advocate in you. I fee you are quite prepped already, i.e., seeking inside tips of expectations from all of us. What a spouse!  Like Sumi mentions reassurance given to your son right now w/the hospital visit is definitely the way to go.

Many adults and teenagers don't even understand what MS means to them as spouses, siblings, children, colleages, etc., or what their role will be, or what the MSer will deal with so I'd not try to explain any of that at this point.

Can you give us a little understanding of what brought her to the hospital for the workup? What functions did she lose, etc. what were the symptoms? Would like to give you a more detailed glimpse of what you may be involved with and can do that w/a bit more info.

To generalize, you may be looking at lifestyle changes that could include less activities (or at least more spaced out extra activities/events, etc).  You can also be looking at being the temporary or permanent sole source of income (depending on what phase she's in, or what functions she lost currently) for awhile.  

If you think of it as living each day in a slower gear that will be helpful for today. Always leave in the back of your head that function can and does improve for many. Adjustments to limitations takes time, and patience is so difficult but a must.

Many of us here still work, some cannot due to associated disability. It's a fact not meant to scare you  - it just is what it is.   Not sure if you are the type that likes dealing w/facts straight on, but thinking since you found us that may be the case. If she's the same, or similar then regardless of what your both looking at you'll do it together. And, your son will adjust in step w/your family lifestyle.

Most importantly, reassure her too that your by her side always. That feeling between two is worth more than gold.
Sorry to go on and on,
Welcome and thank you much for trusting us w/your concerns. Sure hope we can help.
-Shell

[Sumanadevii]

Someone must have given quite the hint for you to believe it is MS.  Thankfully she has an advocate in you!  

Your son will want to know why his mother is in the hospital.  He will pick up clues that she may be sad or that you are worried.  He will need to be reassured that right now mom is sad but remind him how strong she is....and together as a family you will be fine.  I would involve him as much as possible with visits to the hospital.  Maybe a diary with pictures he draws would help.  You write the words for him under the drawings.  In this way, even with all the extra activity around you, you will keep in touch with his feelings at the moment.  What a horrible time of the year for a family to be given this news.  I am sending strength your way.

[supermum_ms]

I'm sorry you've found us through the situation of your wife's health, welcome and i hope we can help you and your wife through the times ahead. MS is a disease that often takes a long time to dx, it is dx of exclusion so please try not to be too frustrated if she doesn't get an official dx straight away. If this is her first official clinical attack, the MRI may not show enough to immediately dx though sometimes the MRI fits the criteria straight away and its a quick diagnosis.

If you look at the top right of your screen, the yellow icon is our health pages, I highly recommend having a read through, it will help you understand the dx process. Any question that needs answering is ok here, we try and do our best to answer any question that comes up, so please ask away!

Take care...........JJ