Benjamin Hofmeister
Forum Replies Created
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I suffer in any kind of temperature extreme. In the heat I wilt. In the cold, I stiffen and curl up. It’s like I’ve become a reptile and cannot regulate my body temperature. My neurologist and I are on a quest to find out if any lesion in my hypothalamus region are interfering with my inner thermostat, and whether I’m experiencing autonomic dysfunction.
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I just keep missing your posts Mike 😆
I had the covid vaccine in 2020 and even spaced it around my Ocrevus infusion so that it would be most effective in theory. I never made any antibodies, so I got covid anyway. Since I wasn’t producing anybodies and have now had covid three times without ever needing to go to the hospital, I haven’t bothered with any boosters. It seems counterproductive for me to take a vaccine that won’t protect me from a disease that won’t put me in the hospital.
With that said, my MS symptoms have increased since then, but since I have Progressive MS, they probably would have anyway. I doubt the vaccine had anything to do with it, but I can’t really say one way or the other.
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I sent it again.
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I can’t believe I didn’t see this earlier! I use CBD edibles at bedtime to help relax my legs so I can get a good night’s sleep. They do have varying levels of THC in them, but not enough that they are illegal in my state, which is not a state that allows recreational use. In my experience, they do help with stiffness and spasticity which is exactly what I need.
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When I was still in the army and deploying to various combat zones, I thought nothing of updating Wills and Powers of Attorney before each trip. It was a hazardous profession and doing that just made good, practical, sense.
With multiple sclerosis, I’ve avoided doing this because it felt like I was making end of life decisions for a nonfatal disease. I’ve recently gotten on the ball about it because it makes as much sense now as it did then. Even if MS is far less dangerous. I don’t know how I could be so practical about the first, but not the latter.
Wait, yes I do. I accepted the risks involved with being a soldier and it took years for me to accept that I had MS and was limited by it.
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Mike,
Let me know if you received it ok. Sometimes my emails go to folks spam folders.
Ben
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Mobility Works is where I got the van we have now. It’s a Chrysler Pacifica and has been very reliable and easy to get in and out of. Unfortunately, the lowered floor makes every speed bump a potential hazard and with three growing boys, we really need something bigger. I’ve got the wrap at Mobility Works keeping her eye open for a full size van. I looked at some of the SUV options, but they seem to have a lot of maintenance issues.
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I emailed it to you.
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Not at present.
Sorry, I’ve been wrapped up in the 31 Days of MS community outreach and haven’t given it as much time as I should.
If you’re willing, I’d really like you to consider submitting your story. I’ll PM you the information.
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An implanted phrenic nerve stimulator for Central sleep apnea may be in my future. I already have the implanted baclofen pump. So if I ever get to the point where I’m considering a stimulator for bowel and bladder control, and I will be well on my way to being truly Bionic.
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I remember when my parents started using a pill organizer and I thought I would never need one. I don’t use mine everyday, but it is indispensable when traveling.
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Thanks for the great suggestions Mike! I’m looking into it.
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I’ve always avoided making resolutions because I tend to make non-realistic, unattainable ones. Yours definitely break that mold.
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I’m with you Mike. There would have to be overwhelming evidence that having a beer worsens multiple sclerosis before I would deny myself the pleasure.
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I did see that Mike. It’s a little depressing since Ocrevus is the only approved treatment for PPMS. I don’t show any new lesions on my yearly MRIs, but my disability continues to increase. I’ll continue taking Ocrevus, but my focus is on symptom control.
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Thanks for that very detailed write up Millie! That was probably the best response to the question.
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I’ve been curious about this too Mike. I’ve run into plenty of online options, and maybe I could do that using voice to text Etc. Unfortunately the classes or even The Graduate level program that I’d like to be part of cannot be done online. I could probably still do it, but it would require driving to campus and I cannot drive. I’m still looking into it and into Solutions, but I don’t have any yet.
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I definitely sleep better with fewer spasms if I exercise that day, or at least stretch before bed.
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To the best of my understanding, it is still twice a year but the sub Q injections only take about 15 minutes compared to the three to four hours of the infusion. I’m going to ask my neurologist more about it next month and maybe I can switch…. if it has the same efficacy of course.
I was on two different dmts before ocrevus and the diagnosis of progressive MS. On an MRI I don’t have any new lesions or enhancing lesions but I continue to decline. It’s been explained to me that the disease activity has stopped, but with no way to remyelinate, the disability continues to progress as demyelinated areas of my brain and spinal cord eventually die off. I know that’s not very cheery, but that’s life.. or at least life with MS.
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My December medical calendar is blessedly clear. I have a couple therapy sessions scheduled, but no real medical procedures. That all starts again in January with a baclofen pump refill, a follow up with a sleep doctor, yearly appointment with the optometrist, an MRI, and a check-in/ checkup with my GP. It promises to be a full month.
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I am so glad you wrote and posted that. I was originally diagnosed in 2014 as well by a neurologist who is not an MS specialist. I will always be grateful to him because shortly after the diagnosis he suggested to me that I see an MS specialist because even though he knew enough about MS to diagnose it, he was a headache specialist and thought I would be better off seeing a neurologist with an extensive knowledge of multiple sclerosis. I have really lucked out with my current neurologist who is not only a specialist, but also an associate professor, teaching about multiple sclerosis and involved in research.
Not everyone is that lucky. I hear horror stories about people going to their neurologist and feeling like they know more about the disease than the doctor does. Often they do not have the option to change doctors, even if a better fit was available.
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When my MS symptoms first became noticeable, it was mainly with my right foot. When it started to affect the other foot I thought, “I don’t like this, but as long as I keep full use of my hands and eyes I’ll be okay”.
Naturally that’s where MS went next.
I miss my dexterity. I could tie the smallest knots with suture material, was a sight to behold with a knife in the kitchen, and could see excellent at night. Now I see double every time I get the least bit fatigued and my hands struggled to pick up a dropped item.
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I get most of my care through the Department of Veterans Affairs, and the Disabled American Veterans offers transport to VA appointments. It’s a great service, but like you said, you have to plan on taking the whole day for one appointment.
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I’m curious about the subcutaneous version of Ocrevus that just got approved. I think I’ll start a discussion about it in the MS treatments thread.
