Saturday, August 15, 2009

Blogs are Powerful Tools

As MS patients, we do a great service to others by simply talking about our experiences living with this disease. Blogs can be powerful and empowering.

I received the following comment at If you have ever used Solumedrol infusions and had the yucky, penny taste side-effect, then you can appreciate the significance of finding firsthand knowledge regarding that experience.
Just introduced to Lisa and this site while having my steroid infusions this week (had it done about a year ago and this is my second try). I told the nurse, who called the Dr about the immediate metallic taste. Both said they had never heard of it! I also had it last year. The nurse passed this on to the hospital druggist who also said she had never heard if it.

Well, on my second morning of treatment this week, she came up to me with pages printed up from Lisa Emrich and The Beginners Guide to Solumedrol! So nice to know I was not imaging this! What a wonderful thing that this woman took the time to google this and come to me. So I have come equipped with my Jolly Ranchers which truly helped!

Was dx'd 13 years ago, but for most of those years took my Avonex shot every week, but did not really affect my daily life. Now I have to use the cane always and MS is really a part of my life. BUT I WILL NOT MAKE IT MY TOTAL LIFE!!
Makes me feel useful and helpful. :)


  1. What an awesome story! You are indeed a very useful woman!

  2. Natalie, you're too sweet. Thanks so much!

  3. Hmmph, they just could not take her word that there is a metallic taste when having a Solumedrol infusion. I did learn something, I have to try the jolly ranchers next time. Pickles or peppermints is what I would have on hand to take away the metallic taste.

  4. I can't BELIEVE a DOCTOR had never heard of the MOST common side effect of Solumedrol!!!!!! OY VEY
    Very disturbing...very. (PS. I was only person my neuro knew who never got that taste. I never did.)