For the longest time I have advocated that MS patients ought to ask a neurologist to define “what success is” when determining (or changing) his or her treatment options. So here are details of my recent experience.
Last year my neurologist had me tested for the neutralizing antibodies (NAB). Their office originally told me it was fine so I put it in the back of my mind and I never thought twice about it.
Then my neurologist wants to see me again but the office doesn’t explain the reason for another visit. So when I finally have another appointment she explains that the original test results were actually elevated for the presence of a NAB. Accordingly, she wants another NAB test run again and another MRI performed; her office also stopped my prescription of Betaseron from being refilled.
I asked what a new MRI would accomplish because I am already crushed by overwhelming stress (job, blah, blah, you name and I am probably dealing with it). As a result, I strongly felt that the awful stress I am facing is more than likely going to reveal enhancement of existing lesions and/or create new ones that will show up on another MRI.
However, I was so moved and taken aback by her genuine devotion to her profession; I then had my blood drawn for another NAB test.
Afterwards, their office called me up and told me that the new blood test results no longer showed elevated levels for a NAB. And they also called up my pharmacy for a prescription of Vitamin D (for once a week) since I have that vitamin deficiency. However, I am still reluctant to have another MRI.
So then I called up the Beta Nurse to get a second opinion about having another MRI. I explained my situation and my primary purpose to remain on Betaseron because it is the thinnest needle available; it has taken me so long to get over my needle phobia. But most importantly, I felt that my terrible stress would skew the MRI. Ironically, MS is the least of my problems.
The Beta Nurse bluntly told me that I ought to respect a neurologist who sounds like someone who is doing her job. Even when I continued to prod the Beta Nurse, again without hesitation, she said that Betaseron “may or may not” be the right medication for me so I ought to let my neurologist see what entire puzzle looks like (by having another MRI) instead of just looking at a few pieces of the puzzle.
Again, I was taken aback; especially by the Beta Nurse who already has a vested interested in me remaining on Betaseron.
Long story short, here is some wisdom that I have often tried to apply to my life:
The wise man knows that he doesn’t know…
And the prudent man respects what he doesn’t control…
I’ll readily admit that I do not know what is going on with my body. And from what I do know, I will accept the advice from a medical expert on how I can best modify this disease. As a result, since I cannot control MS, I am obligated to respect it.
My neurologist has vast experience in her field and she is so widely recognized in the medical community. And more importantly, I also admit that I am also someone who has undeservedly benefitted from everything associated with my neurologist; physical therapy, sleep study, MS support group, weekly exercise classes, etc.
It is absolutely vital for someone to be informed patient instead of a hapless victim but there comes a time, like now, when I should allow an expert to utilize his or her expertise.
Last year my neurologist had me tested for the neutralizing antibodies (NAB). Their office originally told me it was fine so I put it in the back of my mind and I never thought twice about it.
Then my neurologist wants to see me again but the office doesn’t explain the reason for another visit. So when I finally have another appointment she explains that the original test results were actually elevated for the presence of a NAB. Accordingly, she wants another NAB test run again and another MRI performed; her office also stopped my prescription of Betaseron from being refilled.
I asked what a new MRI would accomplish because I am already crushed by overwhelming stress (job, blah, blah, you name and I am probably dealing with it). As a result, I strongly felt that the awful stress I am facing is more than likely going to reveal enhancement of existing lesions and/or create new ones that will show up on another MRI.
However, I was so moved and taken aback by her genuine devotion to her profession; I then had my blood drawn for another NAB test.
Afterwards, their office called me up and told me that the new blood test results no longer showed elevated levels for a NAB. And they also called up my pharmacy for a prescription of Vitamin D (for once a week) since I have that vitamin deficiency. However, I am still reluctant to have another MRI.
So then I called up the Beta Nurse to get a second opinion about having another MRI. I explained my situation and my primary purpose to remain on Betaseron because it is the thinnest needle available; it has taken me so long to get over my needle phobia. But most importantly, I felt that my terrible stress would skew the MRI. Ironically, MS is the least of my problems.
The Beta Nurse bluntly told me that I ought to respect a neurologist who sounds like someone who is doing her job. Even when I continued to prod the Beta Nurse, again without hesitation, she said that Betaseron “may or may not” be the right medication for me so I ought to let my neurologist see what entire puzzle looks like (by having another MRI) instead of just looking at a few pieces of the puzzle.
Again, I was taken aback; especially by the Beta Nurse who already has a vested interested in me remaining on Betaseron.
Long story short, here is some wisdom that I have often tried to apply to my life:
The wise man knows that he doesn’t know…
And the prudent man respects what he doesn’t control…
I’ll readily admit that I do not know what is going on with my body. And from what I do know, I will accept the advice from a medical expert on how I can best modify this disease. As a result, since I cannot control MS, I am obligated to respect it.
My neurologist has vast experience in her field and she is so widely recognized in the medical community. And more importantly, I also admit that I am also someone who has undeservedly benefitted from everything associated with my neurologist; physical therapy, sleep study, MS support group, weekly exercise classes, etc.
It is absolutely vital for someone to be informed patient instead of a hapless victim but there comes a time, like now, when I should allow an expert to utilize his or her expertise.
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