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Viewing 15 posts - 1 through 15 (of 173 total)
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  • #18669
     Ed Tobias 
    Keymaster

    How much did you take, John?

  • #18635
     Ed Tobias 
    Keymaster

    Helen,

    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.

    Ed

  • #18629
     Ed Tobias 
    Keymaster

    LS,

    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.

    Ed

  • #18604
     Ed Tobias 
    Keymaster

    Hey Mary –

    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.

    Ed

  • #18574
     Ed Tobias 
    Keymaster

    Kaye,

    Have you tried using CBD alone, since it’s much less expensive. Or, do you need the THC for your pain? On the traditional med side, have you tried gabapentin?

    Ed

  • #17751
     Ed Tobias 
    Keymaster

    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.

    Ed

  • #17327
     Ed Tobias 
    Keymaster

    To be clear, it wasn’t the two Los Angeles MS clinics who misdiagnosed these patients. They had been incorrectly diagnosed by other doctors and sent to the MS clinics for re-evaluation.

  • #17131
     Ed Tobias 
    Keymaster

    Jackie,

    I like your positive attitude!

    Ed

  • #17111
     Ed Tobias 
    Keymaster

    I wrote something about this back in January.

    Mindfulness: Putting Mind Over MS

     

  • #16855
     Ed Tobias 
    Keymaster

    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.

  • #18605
     Ed Tobias 
    Keymaster

    Hi Treva,

    I’m glad that you’re doing well with Ocrevus, as many are. I’m being treated with Lemtrada and also doing well, I’m happy to say.

    Also, I’m sorry that I welcomed you again today. I see that you’ve been a member of the forums for at least a year, so please forgive the double-welcome.

    Ed

  • #18431
     Ed Tobias 
    Keymaster

    No surprise at all. If you’re worrying about your bladder and bowel you’re bound to be tired and more disabled.

    I’m pleased that my Lemtrada treatments seem to have improved both for me, somewhat. Forcing myself to drink water also helps. :-).

  • #18105
     Ed Tobias 
    Keymaster

    Hi Jono,

    Best of luck with your hospital visit tomorrow. I hope all goes well. Please keep in touch with us.

    Ed

    • This reply was modified 3 months ago by  Ed Tobias.
  • #17734
     Ed Tobias 
    Keymaster

    Micki,

    Your post was held for moderation because it contained a link. I edited it so that it contained the web address without linking to it and it’s now been posted.

     

    Ed

  • #16740
     Ed Tobias 
    Keymaster

    Ann,

    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.

     

    Ed

Viewing 15 posts - 1 through 15 (of 173 total)
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