We’ve had a slew of new members over the past couple of days, topping the 800 mark. I’ve tried to welcome each of you individually but my apologies if I missed you when you joined.
John Connor, my co-moderator, and I are glad that you’ve joined us. Communication among people with MS, their caregivers and their health care providers is […] View
I don’t know when I moved from RRMS to SPMS and my neuro never told me. It really doesn’t matter, except to insurance companies and government regulators.
MS is MS, no mater what it’s called. Eventually it will move from symptom “attacks” to a slow progression of symptoms. Sometimes the attacks are skipped and it’s just a downhill slide. I think people with MS would be better off if doctors just told us that, rather than giving names to the stages.
Brain fog, depression, memory and other above-the-neck symptoms are usually due to new, active or growing lesions in the brain. Below-the-neck symptoms – mobility, bladder/bowel, sexual – are usually due to lesions along the spine.
I hope your MRI will pinpoint what’s happening with you and your neuro can prescribe a DMT that will hold those symptoms and, possibily, reverse them.
I’ve been using 2,000 IU of vitamin D for many years but have never used a higher dose. I’ve also been treated with several DMTs over the years including Aubagio, which worked well for me.
How long have you been using Aubagio and how does that compare with the length of time you’ve been using the 10,000 IU of vitamin D? Is it possible your improvement is due to the Aubagio or are you convinced it was due to the vitamin D? My intention isn’t go downplay the significance of the D. I’m just trying to get a better handle on the balance between meds and alternative treatments.
Good for you! I’ve used a scooter for years and it’s been on trains, and boats and planes, as well as in the back of my SUV. I’ve ridden it in 15 or 16 countries. There’s no reason we can’t be as mobile as possible.
It should be made clear that this issue occurred in a very small number of people during, or shortly after, their Lemtrada infusions. It appears that it can be avoided with careful monitoring of blood pressure during the infusions.
I’ve had jumpy legs, in bed, for most of the years I’ve had MS. Sometimes they’re bad, particularly the left one, sometimes they’re calm. I’ve used baclofen, which helps a bit. I’ve also used some CBD oil under the tongue. That does a better job, but it’s expensive.
I’ve also had cramps in my left calf and foot. These also come and go, but this only happens in bed at night. Stretching seems to help ease them.
It might be the meds. However, I take the same meds every night and the dry mouth varies…some nights it doesn’t happen at all. I wonder if it has to do with what I eat between dinner and bedtime. It may be related to my sugar take. More sugar = dry mouth.
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