Have mentioned that I'm trying not to get my hopes up about this new medication? One worry that has passed is reactions the actual infusion. It went pretty well. Now my expectations based on how I understand this drug to work is that right away it will work to prevent my MS from advancing. The 3 areas that made me feel it was worth trying this were how MS affects my diaphragm, breathing, holding my head up (neck strength) as well as a tiny bit of strength that I still have in my right hand.
My legs and hips have not worked for years. For a few years now my left hand has been useless and a few years ago I found my trunk (stomach and back muscles) lost the ability to lift myself up if I tipped over at the waist. I now have straps that go around my shoulders to hold me into the seat of my chair. I also have tilt and recline control in my chair. I can still get my right hand's little finger around the seat recline control but sometimes it takes 10 to 15 mins to slowly get my arm and hand over. I found that when I yawn or cough my arms raise up and I tried to synchronize using my recline joystick with those 2 things. Late in the day though, I'm no longer able to do this and have my wife lean me back when I need to change positions.
So my first thought is that these effects will stop advancing and I can keep what little I have. My understanding is that my body will re-myelinate to a certain extent if the autoimmune system is prevented from doing its damage. So my long-term hope is that I get the use of my right hand back and I'm able to drive my chair again. Of all the things I've lost this one has been the hardest to accept. One thing I want to say about MS is it is often said it's an autoimmune disorder. That's slightly off-base because what it really is is that the blood/brain barrier allows the immune cells to enter and attack the myelin sheath on the nerves. This is the real problem because the immune system should not be allowed into the brain and somehow these cells make it through and damage one's own body. So what this new drug does is it either eliminates or destroys one type of immune cells called the B cells. There is a drug called Tysabri that does similar things only to the T cells of the immune system. Testing of this drug on my type of MS as been fruitless. So far this new drug Ocrevus is the only one that has been effective for my type and is FDA approved for my type of MS.
So my long-term hope is that I get some remyelination back and I can use my right hand again. Course it is possible that I'll get more than that but of course no one knows and it will be what it will be.
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