My DH was diagnosed with MS in July and it's seems like it's progressing so rapidly that our heads are spinning. He is 40 years old. 2 neuros have told us they believe he's had it for at least 10 years undiagnosed. In the meantime he was sent to orthopedic drs, psychologists and so forth. But now we know what we are up against and while we don't like it at least it has a name.
He was on Betaseron from Aug until this past month where a blood test showed his liver enzymes were off so he pulled him off. In that one month his health is deteriorating and his ability to walk is getting worse. After gauging his gait and symptoms the neuro has now decided that beta was doing nothing for him really. Both neuros we have saw so far said his MS is "progressive relapsing." It's so hard to watch someone you love go through this. He walks with the assistance of a cane and sometimes a walker. Sometimes I don't feel he's secure with either one.
We are now faced with a decision from 2 choices the neuro has given. He has been on solumederol infusions starting at 5 back to back (every other day) and now once a month since Sept. with no real improvement. So now we have to decide between novantrone or tysabri. He advised us to read up on them and let him know what we want on March the 1st. I am trying not to voice too much of an opinion and stick to the facts only and let him make his decision. I am beside him 110% either way but both petrify me! We have 2 young children and life is already turned upside down since dealing with this monster.
I guess what I am asking for is others experiences with the two and if any one has any input from the caregivers perspective. I don't know what to expect from either one of them clearly. I've read the official info on both courses and am aware of the extremes yet somehow I can't accept it.
It's a very scarey place that we are all in. We try to be strong for him and encouraging but most of the time I am a mess on the inside. I don't want to steer him wrong. I don't want to encourage one therapy and come out with the horrible possibilities and then blame myself or worse yet him blame me. It's almost like I am the parent of my husband right now. MS has effected him mentally as well as physically and I worry about his capacity to make this decision. This could be huge! So far I have no peace either way. I can't tell his thoughts because I swear I think he leans on me to make the decisions and this one I just can't do for him.
He was on Betaseron from Aug until this past month where a blood test showed his liver enzymes were off so he pulled him off. In that one month his health is deteriorating and his ability to walk is getting worse. After gauging his gait and symptoms the neuro has now decided that beta was doing nothing for him really. Both neuros we have saw so far said his MS is "progressive relapsing." It's so hard to watch someone you love go through this. He walks with the assistance of a cane and sometimes a walker. Sometimes I don't feel he's secure with either one.
We are now faced with a decision from 2 choices the neuro has given. He has been on solumederol infusions starting at 5 back to back (every other day) and now once a month since Sept. with no real improvement. So now we have to decide between novantrone or tysabri. He advised us to read up on them and let him know what we want on March the 1st. I am trying not to voice too much of an opinion and stick to the facts only and let him make his decision. I am beside him 110% either way but both petrify me! We have 2 young children and life is already turned upside down since dealing with this monster.
I guess what I am asking for is others experiences with the two and if any one has any input from the caregivers perspective. I don't know what to expect from either one of them clearly. I've read the official info on both courses and am aware of the extremes yet somehow I can't accept it.
It's a very scarey place that we are all in. We try to be strong for him and encouraging but most of the time I am a mess on the inside. I don't want to steer him wrong. I don't want to encourage one therapy and come out with the horrible possibilities and then blame myself or worse yet him blame me. It's almost like I am the parent of my husband right now. MS has effected him mentally as well as physically and I worry about his capacity to make this decision. This could be huge! So far I have no peace either way. I can't tell his thoughts because I swear I think he leans on me to make the decisions and this one I just can't do for him.
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