Sunday, August 8, 2010

MS Information: In Real Life and Online

I've been a bit quiet lately.  My apologies.  So much going on.

First off, if you haven't opened it yet, turn to page 22 of Momentum magazine.  It is the cover story: "MS in the Information Age: Safe Travels through the Online World."  For the article, the author interviewed three bloggers including myself, the Wheelchair Kamikaze (Marc) and Trevis Gleason.

In reading our comments, suggestions, and quotes, we seem to echo each other on many topics.  One of the questions asked me during the interview was: "If a friend of yours were just diagnosed with MS, where would you send her for information?"

That's a good question and one for which I had an "it depends" type of answer.  Truly, we are so unique and our needs differ at various points along our journey.  Although the personal information which only fellow patients can offer, I admittedly did recommend the big MS organizations as being good sources.

The National MS Society offers a heckuva lot more information on their website than when I was diagnosed.  The educational material they had then had to be mailed to my house.  I probably still have those handouts in a file drawer somewhere.  And I just love the information provided by the MS Trust in the UK.  I especially love the Exercises for People with MS section.  The animated examples are great.

Now the question of what would you tell a friend who was just diagnosed with MS became reality recently.  She and I are both musicians and had several friends in common on Facebook.  I happened to see a comment she left for someone mentioning steroids and having MS.  Then I saw that she lives maybe 5-10 miles from me.  Hi Shannon!

I contacted her and we had lunch last Monday.  Actually I invited her to come with me to my neurology appointment last Monday.  The appointment was with the nurse practitioner who basically cares for me and my MS.  It was a typical appointment and I didn't alter anything of which needed to be shared, even briefly discussing some bowel issues which had come up.

So what would I tell a friend....?  The real response is I would listen.  Simply listen.  And that's exactly what I did last Monday.  Shannon and I just talked.  No emphasis on information online besides saying that I'm kinda involved with writing about MS, which is an understatement.)

It's the person-to-person connection and exchange of information which is so very important.  That's what we do all the time on our blogs and in our communities.  It is what I did last Monday.  And Shannon did the same for me.  Thank you!

Next developments.  As Shannon witnessed my balance stinks.  Feet together, arms out in front, close eyes.  Ha!  It's not a wobble, it's a falling straight backwards while the nurse grabs your arms to keep you upright.  (Do wish that I could see what it looks like)

My numbness has grown from my feet to my bra.  My left foot and back have been buzzing and tingling for over a month now.  (It's only the right side which had done that previously.)  My eyes get blurry and slightly bouncy.  And in the past few days, my face has gone into novocaine mode.

Last Monday I went back to the office after a great lunch and did one gram of Solumedrol (one day only).  Thursday, I got a bone scan.  This Tuesday, I'm getting my annual eye exam.  And next Thursday, I'm getting a set of MRIs done on the Tesla3 machine.

Depending upon the outcome of all these tests, I may be starting pulse steroids soon.  I do have mixed feelings about that.  On one hand, it is undeniable that my MS keeps slowly progressing.  On the other hand, I actually do feel better than I have in quite awhile.  Surely it's due to putting my RA into remission with the Rituxan and probably from the continued weight loss.

Finally, I learned that losing the weight and changing what I eat has not lowered my cholesterol levels.  In fact my numbers are higher than they were six months ago.  Boo!  So my rheumatologist put me on a statin to try to get those down.

Afterwards I learned that both my parents have high cholesterol so I come by it naturally.  Geez, this makes me feel old for some reason.  Maybe it's all those TV commercials connecting high cholesterol with heart disease and aimed at the generation just above me.  Where are the examples of young people (yes I still mentally feel in my 30s) who need to use a statin?  I know I must not be alone.

And now I get to find out exactly what I would do if newly diagnosed with a condition.  Where do I start?


  1. I saw the Momentum issue and found it impressive, especially as like you I remember previous years. It was startling to read about people I "know" through the blogging community. Thanks again for your service to us and good luck getting your MS etc. symptoms under control.

  2. Lisa
    I am bummed to hear about your MS being "wonky" right now. When I first started Rituxan I went off of all my other MS and RA drugs. That only lasted a while then I went back onto the others. Now I do pulse steroids, Copaxone and Rituxan. I sometimes wonder if the C is doing anything? I have tried different variations of each..amounts et.. But I know the other 2 are essential.

    Take care

  3. Lisa,

    I think the majority of MS'ers who blog would agree; you deserve a lot of credit for connecting MS'ers in the blogosphere. I am with Judy in thanking you for YOUR service to us living with MS.

    I hope the Solu-Medrol will help ease the problems you are having with MS right now.

    I have a draft that I have not posted yet about cholesterol. When I post it, I hope you catch it. I too am stricken with a bad cholesterol gene.

  4. Do think that is a wonderful job you do...connect MSer blogs together. Hope you do feel better

  5. I think the majority of MS'ers who blog would agree; you deserve a lot of credit for connecting MS'ers in the blogosphere. I am with Judy in thanking you for YOUR service to us living with MS.

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