Rare Disease Day 2013

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This topic contains 2 replies, has 2 voices, and was last updated by  Lelainia 5 years, 2 months ago.

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  • February 28, 2013 at 11:03 am #8776

    Lelainia
    Participant

    Today is Rare Disease Day and I’m talking about NMO on my blog: http://tatterededge.blogspot.ca/2013/02/rare-disease-day-2013.html

    April 4, 2013 at 2:00 am #8859

    Tracey
    Participant

    Hi Lelainia

    How are you?  The change in diagnosis must be a bit of a relief.  Is the new medication regime providing you with any relief?  I hope you are doing well!

     

    April 4, 2013 at 11:35 am #8861

    Lelainia
    Participant

    Hi Tracey,

    I am doing okay. Since having had my diagnosis amended in late November, I have had a round of iv steroids, which I don’t think did much for me. I had increased numbness in my hands, which always surprises me-once you lose feeling in your hands, you would think that was it, but no, there are levels of numbness, as I’ve found out. I also had a weird zapping/zinging sensation down my legs, which also didn’t go away. It seems like once I get a symptom, it sticks.

     

    I am taking Imuran, an immuno supressant. I am on step two of a gradual increase in doseage. I find that the single pill at night helps me sleep, which is a good side effect, as my sleep is terrible-I often wake in the night with migraines. The two pills I take in the morning have been a challenge, as again, they make me sleepy and that’s not optimal when you are busy trying to have a life. When I see my NMO specialist in June, I am going to see if  I can do the double dose at night instead.

     

    Other than that, it’s business as usual. Honestly, I think the NMO drugs are like the MS drugs in that you take them, hoping they will help, but you can’t really feel a difference or know for sure that they are. (If that makes sense.)

    Thanks for asking Tracey. I hope you are doing well too!

     

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