Update on MSlisaSAYS Treatment

Living with Multiple Sclerosis

A complete update on my personal journey living with Multiple Sclerosis.

Well I am disappointed because I just completed a head (only) MRI and results showed several new small lesions on my brain along with two enlarged older lesions.  With the MRI and the results of my monthly labs, this indicate that my last dose of CAMPATH didn’t work this time.  It doesn’t surprise me because I haven’t felt really well since my infusion back last March. The summer left me on a roller coaster ride which has continued now into the last part of this year.

BUT each day has brought its own challenges which I am determined or overcome. 

Living with Multiple Sclerosis

It seems to be easy to withdraw from everyone while going through the more difficult days so trying to remain upbeat has been hard but not impossible.  I’ve reduced getting out and driving because of symptoms becoming overwhelming at times and trying to be safe. The computer has been my largest outlet it seems this year, I seem to pour a lot into writing the blog and writing articles for Healthline as well which I really have enjoyed.  There really has been a blessing by meeting new people on line and being able to read some books written by some talented authors who also suffer from MS.  I love seeing the positive results that have been accomplished by talented people whose lives have been changed dramatically by this devastating disease.  It really warms my heart to see people who not only survives this daily fight but also reaches out to help make things better for others by their encouragement.

I know that no matter how bad I feel there are always others out there who are so much worse off than me maybe not only with MS but with other diseases or emotional trauma coming from those who claim to love them. It seems that those who have suffered the most are those who have provided the most empathy and supportive advice to others. This is a great big hug and thank you to all of you who do that!  Just would like to say that a prayer goes out daily for everyone who is hurting physically and/or emotionally or who are going through a difficult process.

What the plan is for me is to retake another round of Campath which will be #5 in February of 2014.  My hope is that my body will accept it this time like it has the first 3 times I have taken it and turn things around of me once again. With my lesions primarily in my neck and chest area, it really hit me hard bringing me EDSS score up to a 9.7 at one point, but thankfully after the Campath it reduced it down to 5.0 and got me out of a wheel chair. So being grateful for that kind of turn around makes me really supportive of this drug being FDA approved for treatment for MS soon for others. It’s not only convenient to take which is once a year but it turned things around for me over time. I can’t wait until everyone gets the chance to have that type of progress available to them.

Hopefully I will get to sing its praises once more after the next dose. For now I am taking one day at a time, eating right, trying to get as much rest as possible, getting as much exercise as I can tolerate, and enjoying the Holidays without over doing it. I really pray that each of you have a very Merry Christmas, Happy Hanukkah, or Happy Holidays as it applies to you and that your New Year brings you good health and Best Wishes. Thank you for hanging in there with me with my blog and your support and kind words.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.