Shocking health diagnosis for DS3

Avatar for shirley_v
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Registered: 04-29-2000
Shocking health diagnosis for DS3
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Sun, 08-31-2014 - 12:45pm

What I forgot to mention (though think it more appropriate to write it here) is that on the start of our vacation we received shocking and unhappy news from DS3, Eric.  Before we had left on our trip, he came to our house.  He had been to the hospital and was diagnosed with Bell's Palsy as he had slurred speech that came on him on Monday or so of that week.  However by Friday he was not having any improvement of this despite medication, and so returned to the clinic and the doctor there decided he should return to the hospital for more tests.  Which he did.  And so learned that it was not Bell's Palsy but Mulitple Sclerosis that caused this speech slurring.  We debated on shortening our vacation, but Eric told us that he was being well taken care of in the hospital (as he stayed there where they gave him I.V. of prednisone) and that we should continue our vacation.  He had good support from his friends and siblings who came to visit him.  We talked with him at least twice a day after that. 

Of course we were devastated to hear this news.  And we are all trying to come to terms with what this may mean for Eric.  I only know of MS from a friend (of my age ) who  has  had it since she was diagnosed at 21 years of age.   And she's fared not too badl for most of her life since then, with only more recently being less mobile with legs that don't function normally - though she can do short walks in her  home with the walker, but usually now uses a wheelchair to get around the main floor of their home.  (She uses a chair lift to go to their seconf floor and also one to get down to the basement).  Eric was given printed information about the disease and brought it over to us when he came to dinner on Thursday after our arrival  home.  I have yet to read it.  Ray read it and he sounded quite shocked at what he read.  The news must be dire - outlining all that maybe could go wrong when suffering from MS? 

And yet Eric now is coming to terms or trying to be more positive.  As he does have to live his life as best  he can.  He may not have another episode for some time we hope.  He wants to continue pursuing a new job he's just got about a month ago as an electrician's apprentice and to eventually go on to becoming an electrician.  Eric is 28 going on 29 this November.  The hospital tests seem to have determined that back pain he had a few years ago may have been an episode of MS then, but he did not think that was the case and it did go away.  So of course he was not tested then.

Also must mention that his speech now is much improved to pretty much normal.  So he is relieved of that.  He had a few sessions with a speech therapist too which helped.

But I will have to get more informed about the disease (though I tend to not want to have to deal with the reality of it, I must admit...sigh).  Who would have thought...not us. 

Shirley

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iVillage Member
Registered: 04-16-2009
Sun, 08-31-2014 - 12:57pm

I am so sorry Shirley. Try to keep positive; I know it is hard to do.  The outlook for MS patients is improving everyday.

Take Care Marie

Avatar for suzyk2118
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Registered: 07-30-1997
Mon, 09-01-2014 - 7:39am

Hugs-  I sort of know the feeling; ds was diagnosed with Ehlers Danlos hypermobility type 2 years ago and that was hard to fathom for us as well.

Sue

Avatar for shirley_v
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Registered: 04-29-2000
Mon, 09-01-2014 - 12:18pm

Sue, if you don't mind my asking, how does this Ehlers Danlose hypermobility affect your son?  I had to look it up online but am not quite sure how to understand how it affects someone day to day.  When was your son diagnosed?  And what led you to seek a diagnosis? 

Shirley

Avatar for suzyk2118
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Registered: 07-30-1997
Mon, 09-01-2014 - 2:30pm

Both joint pain and muscle pain, from about age 17.  Bad 'growing pains' as a child.  PT and chiro helping for like 1/2 hour. Day to day he's in constant pain.  First they just thought that his slightly curved back and the fact that one leg is 1.5cm longer than the other were causing discomfort. We finally found a doc at a walk-in clinic that was more open minded, sent us to another doc who looked closely for arthritis, and said nope, that's not it - but it must be something, so sent him to a rheumatologist who said probably fibromyalgia, but then suspected more, so sent him to a genome specialist who specializes in Ehlers Danlos, and that was it. Thankfully his heart is strong (a common side effect of the hypermobility type) and it's not a severe case but it still affects him daily as constant pain.

Sue

Avatar for shirley_v
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Registered: 04-29-2000
Mon, 09-01-2014 - 10:56pm

Boy, that's rough Sue, for him to have chronic pain like that with no way of reducing it. Sorry to hear that.  There seems to be no end to the sort of strange diseases that can befall the body.  From rare kinds to that which may be more common.  Does you son seem to manage okay or as best he can?

Avatar for suzyk2118
iVillage Member
Registered: 07-30-1997
Tue, 09-02-2014 - 12:42pm

In May he found an OTC  medication (legal) that he can use that helps - it's very expensive (over $100/week) so we're paying for it; unfortunately insurance does not.

iVillage Member
Registered: 08-22-2009
Tue, 09-02-2014 - 2:41pm

 Your family is probably going through a lot of what my family did last year with DD1's cancer diagnosis.  Initial reaction is shock, followed by extreme sadness. Then you put  your big girl (and boy) panties on and deal.   One thing that my DDs especially DD3 often say,  knowledge is power. 

  The initial finding out the what could happen can be scary.  But you have to keep in mind that statisics are just that, statistics.  Chances are his symptoms and issues will fall somewhere in the range but highly unlikely that he will be the upper range and have all of the issues listed. 

Avatar for sabrtooth
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Registered: 12-03-1999
Tue, 09-02-2014 - 7:38pm

These boards are just MADDENING.  Load times are well over 2 minutes, and if I open another window to try and do something while it rolls and rolls, I come back to find it has just ...stopped.

In any event, Shirley, Nester is right.  Knowledge IS NOT something to be afraid of, and no two patients will experience an illness exactly the same.  I have a friend from high school, who was diagnosed with MS when she was about 36.  She is 62 now, and has a full life.  She has a house, husband, raised 5 kids, sewed, volunteered heavily in her church, taught music, and is involved with her grandkids.  Her life expectancy is probably BETTER than mine, since she is not overweight, nor does she have hypertension.   She has gradually became less mobile, but she never allowed that to affect her quality of life. Life is what you make of it.  Look at Stephen Hawking, and Helen Keller.

I was diagnosed 7 years ago with Sarcoidosis.  For me, the side effects of the immunosupressives and the steroids are worse than the effects of the condition, so I have chosen to avoid them, and use just plain old 5 grain asprin, the occasional diuretic, and compression stockings if the leg swelling gets particularly bad.  I don't dwell on what I cannot do, or the "what if's".  I simply do what I can, however long it takes me to do it, and consider the shortness of breath, fatigue, pain, and swelling, just the cost of doing business.  As the nuns and my mother taught me long ago, I "Offer it up" and keep on going. 

Avatar for shirley_v
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Registered: 04-29-2000
Wed, 09-03-2014 - 4:51pm

Thanks everyone for your words of encouragement.  I agree, the shock is what hits you first, but then you adapt, and Eric already seems to have taken the positive route and is getting well informed and just seems happy that his speech slur is gone now and that he feels well and is now back to work (as of yesterday).  I did not ask him, but I sense that maybe he is glad now to savour good moments in life - realizing that this is one way to look at things in life even if you are handed difficulties you never expected.  But that's my guess anyway and I may ask him about this later.

I too have a friend who was diagnosed at 21 years of age with MS (did I already say?).  She is 63 years old now and has always done what she could, forging ahead and adapting to whatever disability her disease handed her over the years.  She's striven to keep active and still attends a modified exercise class at the Y and walks on a treadmill too - albeit slowly but just to keep her legs moving.  She mainly does use a wheelchair now but can manage with a walker to walk short distances in her home.  Anyway she has always remained cheerful (though I know at times she was upset when certain functions deteriorated) but she came to terms with this as was necessary.  

This is all one can do, isnt' it?  I hope that Eric won't have to faced with much deterioration too soon in his life.  I hope he has many years of full use of his limbs or whatever - since MS can affect different parts of  his body. 

Avatar for deenow17
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Registered: 10-12-2004
Mon, 09-08-2014 - 1:35pm
Shirley, just taking a few mins to catch up on the board & am so sorry to hear about your son. He is a year older than my youngest son & I can imagine how hard this is for you. Both as others have said, knowledge is power & as it seems that you are comfortable searching the net, you can find out even more than what your DS3 received from the hospital. I'm sure there are also natural approaches to use when dealing with MS. When my DS1 & myself were each diagnosed with fibromyalgia, we tried different approaches to deal with the constant pain & to put this condition in remission as much as possible. Neither of us uses meds on a regular basis but I will take a sleeping pill once or twice a mth. We both focus on diet & exercise with different decisions for each of us. Sending positive thoughts to all of you, Dee.

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