I had my 1st visit with the neuro who took over my old neuro's practice. I liked him and he has a lot of MS patients - a big plus. It is status quo for me - staying on Tysabri every 4 weeks. No change in lesions on MRI, still JCV negative, bloodwork all good.
After I left, I started thinking about some of the conversation and was struck again by how individual MS truly can be.
He did his neuro exam before looking at my latest MRI. He said after the exam that I had an almost completely normal exam. After he looked at my MRI, he then said that it doesn't match up with me, that with the spinal lesion locations and load, he would have expected to me to have shown more on clinical exam and have significant disability. He then commented that I would be a good case study for his neuro class (he teaches) that neither the MRI nor the person tell the whole story - reinforcing that you need to treat both. Of course, now I am wondering if I am on borrowed time. I have had other docs comment on same thing, so I will get over it.
He also asked me if I expected to be on this med at 95 It was just his exaggerated way of feeling out my thoughts on medication as I age. I told him I was aware of prior and current studies- Ms burns itself out, no it doesn't burn out, yes it does burn out and so on. He laughed. I told him it would depend on how I was doing with both MS (if progressing, what are the med options) and non-MS health issues (if I was paralyzed from a stroke, what would be the point), insurance, and other life factors. He then told me he had a SPMS patient that was off meds since 2004 and had a first and major relapse last week at 72. He said he has other patients off longer and no issues. Not sure if this was just his way of pointing out no guarantees. On a side note, he seemed genuinely distressed about his patient - I see that as a caring doctor.
Those two conversations just hit me hard I guess - that it truly is individual. I wonder if I am living partly in denial due to my good fortune. I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control. Is that denial?
After I left, I started thinking about some of the conversation and was struck again by how individual MS truly can be.
He did his neuro exam before looking at my latest MRI. He said after the exam that I had an almost completely normal exam. After he looked at my MRI, he then said that it doesn't match up with me, that with the spinal lesion locations and load, he would have expected to me to have shown more on clinical exam and have significant disability. He then commented that I would be a good case study for his neuro class (he teaches) that neither the MRI nor the person tell the whole story - reinforcing that you need to treat both. Of course, now I am wondering if I am on borrowed time. I have had other docs comment on same thing, so I will get over it.
He also asked me if I expected to be on this med at 95 It was just his exaggerated way of feeling out my thoughts on medication as I age. I told him I was aware of prior and current studies- Ms burns itself out, no it doesn't burn out, yes it does burn out and so on. He laughed. I told him it would depend on how I was doing with both MS (if progressing, what are the med options) and non-MS health issues (if I was paralyzed from a stroke, what would be the point), insurance, and other life factors. He then told me he had a SPMS patient that was off meds since 2004 and had a first and major relapse last week at 72. He said he has other patients off longer and no issues. Not sure if this was just his way of pointing out no guarantees. On a side note, he seemed genuinely distressed about his patient - I see that as a caring doctor.
Those two conversations just hit me hard I guess - that it truly is individual. I wonder if I am living partly in denial due to my good fortune. I guess I will give myself the day to contemplate what ifs and then go back to counting my blessings and be grateful for today and not worry about what I can't control. Is that denial?
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