I know, seems like a dumb question. After 16 years, I feel like I'm always discovering something new about this disease.
When I was first dx'ed, it was eyes, optic neuritis. And subsequent flare were eyesight related. And yes, there is permanent damage to the optic nerve so I'll never see *perfectly*, but for the most part, I can see and it's my "normal."
It's only been more recent (2-2.5 years ago) that I started tripping, falling. There are lesions on my spine, of course. I have that feeling sometimes-- the heavy legs, the rod strapped to my leg, making walking difficult. I rest. It helps. End of day, much better (????) When this first started, I had a med switch from Betaseron to Extavia, which at the time I was told were exactly the same. But I swore that that's when the walking troubles started. My dr. pushed insurance that I needed Betaseron (I can't remember now, but I think he had MRI to back it up), so I went back on Betaseron, and you know what happened? I was better. I also went on Ampyra somewhere during that time, so it's muddy. Then I had one new lesion on last MRI so dr. switched me to Gilenya. And I swear, from that point my walking's been worse, even on the Ampyra. Sometimes better-worse, sometimes worse-worse, if you know what I mean. The barometric pressure falls, rain storm coming in and EGADS!!
And I'm fumbling for answers. I know Betaseron is a DMD, so shouldn't *really* affect symptoms. I know correlation is not causation.
And because the walking issue is "new" in terms of the time I've had MS, I also wonder, is this a flare? Or is this a new normal? Some stiffness became normal, but the last 2 days have been terrible. It's so easy (and desirable) to look at outside circumstances and say...that's the culprit! Change the culprit! When is it labeled just a "flare?" And is this a flare? My next MRI is in Sept., so I know that always provides some insight.
Oh, and secondary question: has anyone seen such a marked difference on switching DMD?
And I know. MS is unpredictable. It's ambiguous. I scramble, perhaps in vain, for answers. {sigh}
When I was first dx'ed, it was eyes, optic neuritis. And subsequent flare were eyesight related. And yes, there is permanent damage to the optic nerve so I'll never see *perfectly*, but for the most part, I can see and it's my "normal."
It's only been more recent (2-2.5 years ago) that I started tripping, falling. There are lesions on my spine, of course. I have that feeling sometimes-- the heavy legs, the rod strapped to my leg, making walking difficult. I rest. It helps. End of day, much better (????) When this first started, I had a med switch from Betaseron to Extavia, which at the time I was told were exactly the same. But I swore that that's when the walking troubles started. My dr. pushed insurance that I needed Betaseron (I can't remember now, but I think he had MRI to back it up), so I went back on Betaseron, and you know what happened? I was better. I also went on Ampyra somewhere during that time, so it's muddy. Then I had one new lesion on last MRI so dr. switched me to Gilenya. And I swear, from that point my walking's been worse, even on the Ampyra. Sometimes better-worse, sometimes worse-worse, if you know what I mean. The barometric pressure falls, rain storm coming in and EGADS!!
And I'm fumbling for answers. I know Betaseron is a DMD, so shouldn't *really* affect symptoms. I know correlation is not causation.
And because the walking issue is "new" in terms of the time I've had MS, I also wonder, is this a flare? Or is this a new normal? Some stiffness became normal, but the last 2 days have been terrible. It's so easy (and desirable) to look at outside circumstances and say...that's the culprit! Change the culprit! When is it labeled just a "flare?" And is this a flare? My next MRI is in Sept., so I know that always provides some insight.
Oh, and secondary question: has anyone seen such a marked difference on switching DMD?
And I know. MS is unpredictable. It's ambiguous. I scramble, perhaps in vain, for answers. {sigh}
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