Benjamin Hofmeister
Forum Replies Created
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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.
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Today, October 25th is my 15th infusion of Ocrevus. It might make me a little more prone to infections but it seems to be working.
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Thanks Mike!
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Thanks Katesmom! That’s all good advice. <div>
My ability to regulate temperature seems to be shot. Lesion on my hypothalamus maybe? I wonder if i should make an appointment with an endocrinologist.
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My abdomen often feels bloated and distended too. When my kids were babies, you could look at them and tell when they were constipated, or bloated. I wonder if i look that way? I know it makes me fussy!
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That reminded me to get my flu shot this week.
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I have never heard it called The Barber chair phenomenon until just now. LOL.
I definitely don’t exercise like I should and seem to have lost the ability to regulate my temperature. I also don’t sweat anymore except at night when I’m trying to sleep. If I go sit outside on my back deck and get a little overheated, that’s when my fatigue is at the worst and when I feel more of the barber chair phenomenon whenever I lean my head forward.
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I also deal with swallowing issues on a regular basis. A speech therapist show me how tucking my chin when I swallow (especially liquids) helps, to use more caution with dual consistency foods, like cereal or really juicy fruits or vegetables, and prescribed a device to strengthen my cough, so I can expel anything I aspirate. Another wonderful symptom of multiple sclerosis.
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Gotpitbull, I’m right there with you. People say, “you’re so upbeat!”
I don’t generally write when I’m bitter and depressed.
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Hi again joette! Congratulations on the blog. It is so therapeutic to put thoughts down in writing and even more therapeutic when someone replies and says I feel the exact same way.
You said it all when you said that you are trying to live your best life. That is what everyone with this disease should be trying to do.
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Hi joette and welcome to the Forum! We are so glad to have you but sorry you’re here all at the same time.<div>
Night sweats were one of my initial symptoms as well. Somehow I’ve gotten over that and now do not have the ability to sweat. This makes going out in the heat even more difficult than it already was.
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Hi Tom, sorry for the late reply. I was diagnosed in February 2014, on Valentine’s Day as luck would have it. I think my symptoms started in 2009, however. I had a lot of untreated injuries that I had been putting off getting care for and when I finally couldn’t ignore my symptoms anymore, that led me down the road to my diagnosis.
Yes I can relate to just about all of that. I will be married 15 years this year to a wonderful woman and a nurse, who takes care of me. I seriously doubt I would be able to live on my own. My three kids help too and while I’m glad that they take the responsibility of looking after their disabled dad, I never wanted that for them.
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I saw a very good presentation at the cmsc conference in Nashville this year. The topic was Imaging in multiple sclerosis and whether it’s being done right. The doctor giving the presentation showed normal MRI images of lesions and then converted them to a three-dimensional image, showing that one view of lesions may not show the whole story. It left me wondering if any of my lesions have grown in size, just not from the angle we normally view them at.
My disability continues to progress even as my disease process does not. One way my doctor explains it is that even if I have no new or enhancing lesions on an MRI, those lesions that are there have no ability to heal. With no remyelination a number of my lesions no longer show up as white spots. Instead they appear as black holes on the MRI indicating neuronal death.
That wasn’t very cheery it was it? Keep in mind that I have primary Progressive multiple sclerosis and have no remission in which to heal. My case is certainly not the norm.. if they’re indeed is such a thing.
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Thanks Mike!
I’m sure I’ll have plenty of questions.
