http://www.stewart.sdsu.edu/0mystuff/multiple-sclerosis-kris.txt 07Mar2014 As a person with multiple sclerosis (MS), I find it useful to share the fact of my diagnosis with students in a casual way during classes. This has led more than once to being contacted by a student when they have a friend or family member with the disease. i encourage these contacts since i have found living with the disease to be a challenge that i have learned to deal with and hope i can help other develop a similar sense of comfort. I have a team each year at the MS Walk in Legoland, Carlsbad, CA named Kris' Buddies Please join me 27April2014 To those who are newly diagnosed with (or suspected to have) MS: I sympathesize with you and your family about the "process" that is involved with finally getting a diagnosis of MS. the lack of specificity can be frustrating for the patient and for the family. My history with MS began with optic neuritis (my left eye quit working all of a sudden, while i was a student at University New Mexico working on the PhD). saw an opthamologist who sent me to a neurogist and they would not really tell me much. just an analogy that it was like having a "cold in my left optic nerve" and hopefully it would go away. when i pushed the neurologist for more detail he did say that optic neuritis was a common precursor for MS, but they would not know for sure until a different part of my nervous system was compromised. That was dec 1983 and i started reading up on MS - finding that you do not die, but your life may be compromised and there is a lot that is unknown. i was hired as faculty at SDSU starting aug 1984 with health coverage from kaiser. when i had the sensation of my "shins being numb", i got to see the neurologist (dr. george spinka) who took my history and said it looks likely to be MS. but back in 1985 or so, there was little to be done except try to stay away from heat and from stress. over time they did the MRI, confirming the diagnosis. i learned a lot about prioritizing things in life - what is really important and what isn't. i learned to walk away from confrontations (reduce stress) and continue my swimming (a good exercise activity that does not contribute its own heat like running or biking would). i just progressed with having the relapsing / remitting form of the disease, grateful not to have the chronic progressive form (that annette funicello has - one of the original mousekeeters that i grew up with on the mickey mouse club tv show). i felt powerlessness due to not having specific things i could do for myself. In 1993 the FDA approved the first drug to deal with RR/MS (relapsing-remitting MS) Interferon beta-1b involving an injection every other day with findings that it reduced the number of flare-ups of MS. my disease was progressing slowly and i chose not to start on the injections due to their side effects and it was very expensive. so i just lived with the MS, was given steroids for flare-ups and limped along with my "low stress / mellow" life. july 2001, after looking at my MRI and seeing more lesions, my neurologist gave me a call and said we should revisit the ABC drugs (avonex, betaseron, copaxone) that were all FDA approved. when we met and talked the details, we decided that copaxone would fit my life style and i have been on it, daily injections, since then and have not really had any flare-ups. I only go into all those details to dramatize how unknown things still are with MS and living with it takes getting used to. also, it is a tricky disease to diagnosis and it hits different people in very different ways. Good sources of information are the National Multiple Sclerosis Society http://www.nationalmssociety.org/index.aspx We have a local chapter in San Diego county Pacific South Coast Chapter 5950 La Place Ct., Ste. 200 Carlsbad, CA 92008 Phone: 760-448-8400 Email: msinfo@mspacific.org http://www.mspacific.org/ I attend the chapter annual meeting, usually with a good (optimistic) speaker. but it takes getting used to since many of the other folks attending these meetings are in far worse shape than i am - i.e. they are already wheel-chair bound. I would definitely recommend their "newly diagnosed seminar" - they have one 28 june 2008 in mission viejo. It is best to go with a family and be forewarned that you must keep away from focussing on the negative side of the illness. Please come talk with me if you have any further questions. I deliberately mention in classes that i have MS just in case someone else becomes newly diagnosed or has a friend / family member who is diagnosed. Good luck Kris Stewart stewart@sdsu.edu Encinitas Ca Professor Emeritus, Computer Science (June 2013 retired after 29 years) San Diego State University, San Diego, ca 92182