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)