Still so confused

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 4/2/2011 4:31 PM (GMT -6)   
Hello,
I post very infrequently and many might not know my story but my husband (33) was diagnosed with MS in dec 2010.  He has has 3 tysabri infusions to date.  I posted some wuestions on a larger forum but i fear people misunderstood my need for answers and really being confused as I do understand the disease fairly well. 
 
 We just went to secialist for the 2nd time last week.  He confirmed that the newest  MRI was more reson to have started Tysabri so soon as it shows he has progressive and malignant type MS.  My husband is currently doing great and all symptoms have resolved within the last 2 weeks.  In the 4 months since his 1st symptom and diagnosis he has had three flares, 3 doses of IV solumedrol, 3 infusions of Tysabri a spinal tap and 2 MRI's.
 
Has anyone been told this before?  It was mentioned he was in the top 20% of most severe cases.  What does that really mean, considereing he is so well.  I know Tysabri has a grreat record for those it does not kill, but is the burden of disease directly correlated to the effective bness and statistical outcome of the tratment?
 
I know no one knows for sure but it is so hard to have no answers, support groups, peers, etc that can help me understand better.  My husband yelled at me on the phonw last night (he is not at all a yeller or aggressive person) "I might be in a wheelchair in 10 years and you are going to have to be the breadwinner, you have to get a real career and go back to school".  This shocked, hurt, and scared me.  What is the likelyhood a 33 male that he would have mobility problems or work incapibilities in the next 10 years? 
 
Is there even any general trend to go off of?  It is frustrating and we are young.  He has a multitude of lesions.  How do I know which are the worst or if he has a positive outcome possibly still?  Any advice or experience would be helpful and much appreciated.
Thank you for reading this (and hopefully responding)
jessica

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 4/2/2011 9:45 PM (GMT -6)   
Hey Jessica,

I remember you well. I am sorry I don't have any advice or information for you. I am sorry this is happening to you. What has the doctor said about his possible disability and progression?

I am sure you are very scared. Have you considered finding a counselor who could help you both with this? You might find some tools for coping.

Please keep us posted. I am keeping you in my thoughts and prayers.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 4/6/2011 10:49 AM (GMT -6)   
i'm sorry, i don't really have any answers--nobody does--but it does seem to me that the more resigned and depressed one is, the faster they go downhill, or maybe the faster they go downhill, the more depressed and resigned they are. i will pray for you. there is no law against status quo and/or remission, regardless of treatment.

NotAChance
New Member


Date Joined Mar 2012
Total Posts : 0
   Posted 3/27/2012 3:38 PM (GMT -6)   
I'm in a very similar situation. Around the same age and with the same diagnosis. If you're still around, and would like my email address, let me know.

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 3/27/2012 9:11 PM (GMT -6)   
I always welcome support,advise,knowledge. Sorry to hear of your situation. Are you the wife and your husband has MS, or are you suffering the same diagnosis as he is? It does not matter, just curious, and would lIke to correspond either way. Thank you for responding, I would like to hear more of your story.
Jes

alli in ohio
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/24/2016 11:34 AM (GMT -6)   
Jessica, how is your husband doing now?
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 26, 2018 12:04 AM (GMT -6)
There are a total of 3,006,700 posts in 329,381 threads.
View Active Threads


Who's Online
This forum has 161845 registered members. Please welcome our newest member, StanInCA.
124 Guest(s), 4 Registered Member(s) are currently online.  Details
StanInCA, Bear12, martian2, Bloodyhell