Well, to recap, I was diagnosed with PPMS about 3 years ago. My symptoms started 20 years before that, and I was treated for bunions, Morton neuroma, and other foot problems as well as DDD for years before I found out it was all in my head. Quite literally. Then it took a couple of years for my then neuro to decided I was actually PPMS. I had no remission/relapse in many years that I could remember, so we had to have several MRI'S over time to prove it was PPMS.
This was a new neuro. The old one is now semi-retired and I didn't have a neuro for a year or so - I was doing fine, I thought. Then I began having pain in my legs and feet again, worse than ever. After trying to deal with it myself for a month or two, I finally made the appointment, fully expecting the new neuro to say "What MS, I don't think you have MS, you only have 4 lesions and no new ones for 4 years. Here, go get a new MRI." And that would be it until I got the new MRI.
Far from it. After the usual neuro exam and watching me walk we sat back down to talk.
The neuro said I’ve definitely progressed, which is not unexpected (I knew that). The speed is a bit troubling, but also not terribly unusual. Progression often speeds up following a long period of stability, which evidently ended for me a few or more months ago. He said my spasticity is much worse, and offered help with that. He asked me if I was on a medication to try to slow progression, and I said no, and asked if that was unreasonable in his view. He said not at all, since there is yet no proof it actually works for my form of the disease, and the side effects are often worse than the MS for many patients.
We talked about whether I was ready for disability yet, and I said I would prefer to keep on working as long as I could still walk in from my parking space without risk of falling. He agreed, saying wait and see how you feel this fall and winter. Working as long as you can keeps people active longer, but he would happily support me if I decide I need to stop working (that’s a scary thought).
He went on to say that sometimes progression is weather-related, especially in climates like ours. If I still feel fatigued and we can’t get my pain under control and get me sleeping better by September, he might suggest a trial of working 30 hours a week or less for a month to see if that helps at all, or staying home on sick leave for a week to see if that works. There is also medication for fatigue to try if I need it. We agreed the goal is to keep me at work if we could.
We talked about my frequent trips out east to visit DD, and he said that really doesn’t count as time off because travelling takes a toll on MS patients. I have to say my body agrees with that. In the meantime, he said I should listen to my body (now where have I heard THAT before?) and proactively take a sick day if I need to. See if leaving early now and then has any impact on my weakness, pain and fatigue. I said I would try to see if I could make myself do that after I come back from my trip later this week and see how it goes, but it’s never been something I’ve been very good at. I just have a higher sense of responsibility than most people, I guess. He gave me two new prescriptions to try, Baclofen and Lyrica, adding one at a time to see if they help. I should expect perhaps even more fatigue and daytime sleepiness as I adjust to the medication. I go back in a month and we’ll take it from there.
Although I thought I was prepared for the news that I had progressed (how could I not already know that?), the fact that he quite cheerfully said he would support an application for disability kind of threw me for a loop. I don't know quite how to feel about that. I guess, happy to know that the option is open to me, while at the same time kind of sad because he offered it so readily. You know what I mean? I think I try to convince myself that I'm not as bad off as I really am!
It was kind of strange that as I gave him my litany of new symptoms, he just kind of nodded along as I listed to them as if it was nothing new to him. Then I realized he's probably heard this a million and one times. For some reason I couldn't help think how boring that must be!
That's my latest news. Looks like I'll be visiting this neuro more often as he seems much more interested in treating my symptoms than forcing me to take a DMD, which I felt was all the other guy cared about.
This was a new neuro. The old one is now semi-retired and I didn't have a neuro for a year or so - I was doing fine, I thought. Then I began having pain in my legs and feet again, worse than ever. After trying to deal with it myself for a month or two, I finally made the appointment, fully expecting the new neuro to say "What MS, I don't think you have MS, you only have 4 lesions and no new ones for 4 years. Here, go get a new MRI." And that would be it until I got the new MRI.
Far from it. After the usual neuro exam and watching me walk we sat back down to talk.
The neuro said I’ve definitely progressed, which is not unexpected (I knew that). The speed is a bit troubling, but also not terribly unusual. Progression often speeds up following a long period of stability, which evidently ended for me a few or more months ago. He said my spasticity is much worse, and offered help with that. He asked me if I was on a medication to try to slow progression, and I said no, and asked if that was unreasonable in his view. He said not at all, since there is yet no proof it actually works for my form of the disease, and the side effects are often worse than the MS for many patients.
We talked about whether I was ready for disability yet, and I said I would prefer to keep on working as long as I could still walk in from my parking space without risk of falling. He agreed, saying wait and see how you feel this fall and winter. Working as long as you can keeps people active longer, but he would happily support me if I decide I need to stop working (that’s a scary thought).
He went on to say that sometimes progression is weather-related, especially in climates like ours. If I still feel fatigued and we can’t get my pain under control and get me sleeping better by September, he might suggest a trial of working 30 hours a week or less for a month to see if that helps at all, or staying home on sick leave for a week to see if that works. There is also medication for fatigue to try if I need it. We agreed the goal is to keep me at work if we could.
We talked about my frequent trips out east to visit DD, and he said that really doesn’t count as time off because travelling takes a toll on MS patients. I have to say my body agrees with that. In the meantime, he said I should listen to my body (now where have I heard THAT before?) and proactively take a sick day if I need to. See if leaving early now and then has any impact on my weakness, pain and fatigue. I said I would try to see if I could make myself do that after I come back from my trip later this week and see how it goes, but it’s never been something I’ve been very good at. I just have a higher sense of responsibility than most people, I guess. He gave me two new prescriptions to try, Baclofen and Lyrica, adding one at a time to see if they help. I should expect perhaps even more fatigue and daytime sleepiness as I adjust to the medication. I go back in a month and we’ll take it from there.
Although I thought I was prepared for the news that I had progressed (how could I not already know that?), the fact that he quite cheerfully said he would support an application for disability kind of threw me for a loop. I don't know quite how to feel about that. I guess, happy to know that the option is open to me, while at the same time kind of sad because he offered it so readily. You know what I mean? I think I try to convince myself that I'm not as bad off as I really am!
It was kind of strange that as I gave him my litany of new symptoms, he just kind of nodded along as I listed to them as if it was nothing new to him. Then I realized he's probably heard this a million and one times. For some reason I couldn't help think how boring that must be!
That's my latest news. Looks like I'll be visiting this neuro more often as he seems much more interested in treating my symptoms than forcing me to take a DMD, which I felt was all the other guy cared about.
), so that also had me thinking that I am worse off than I think I am...
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