Sunday, February 01, 2009

Which do you want to hear first? The good news or the bad news?

Every now and then I have a major realization about my MS. This time it came from a very hopeful article about using our own stem cells to reverse the damage (including vision impairment) caused by MS. The part that kicked me in the butt, though, was the line where the author said that, after out 10-15 years of having relapsing and remitting MS, the disease progresses to secondary progressive. It was stated as a universal fact.

Is that true? Is it 10-15 years after the diagnosis or the onset? And, if you aren't sure when the disease came alive in you, how will you know when you're time is up? And, since this is an unpredictable disease how the heck to you prepare for it to get worse? If you build wheelchair ramps and you go blind, you are shit out of luck. How will learning Braille help if you lose all short term memory or bladder function?

When I was pregnant with Ruby, I had 40 weeks to prepare. I bought diapers, took an infant CPR class, saved up sick time for maternity leave, and decorated a nursery. I read a ton of baby books and, after she was born, I kept reading, trying to stay a month or two ahead of her latest development.

When Zane was born 12 weeks early, I obviously didn't have as much prep time, but it was ok. I had done it before. I knew how to breastfeed and change diapers, and, in the 8 weeks he was in the NICU, I had tons of time to learn from the nurses, read preemie books, etc.

How is that possible here? I've read a TON of books about MS but they all basically say the same thing. It's a crap shoot. Then, there's the conflicting information. Use disease modifying drugs. Use LDN. Reject all the drugs and just change your diet. Eat lots of protein and low fat. Fast. Rest. Exercise. Keep busy. Rest.

I've figured out how to live with the MS today. I try to digest all the advice, listen to my heart, find people I trust, and take what I like and leave the rest. I give myself 3 injections of Rebif each week; I pray and meditate; I try to keep to a low-fat, low sugar, dairy free, red meat and pork-free diet; I do yoga; I walk; I write; I try to not be my former freakishly strong macho self when it comes time to move a sleeper sofa and other physically strenuous tasks; when I'm not being a "non-compliant patient," I get my monthly Solumedrol infusions; and I try to live one day at a time.

But how do I prepare for the future? Am I being Pollyanna or Annie, to just trust that if I play "the glad game," "the sun will come out tomorrow?" Should I be DOING something?


  1. 10-15 years to secondary progressive is: da, da, dum.....SCARY.

    I can't believe that's the case. I truly believe that positive attitude and taking care of yourself, (as well as staying on the course of disease modifying drugs) will keep you healthy a lot longer. If that 10-15 years thing is true, we're all screwed!

  2. From what I've read, the 10-15 year estimate for transitioning into secondary progressive is based on data before the disease-modifying drugs were in use. So if disease activity is being delayed or lessened, then we should be having much more time before SPMS (if we ever do transition).

  3. This is the question I'm trying to answer, also. I've had MS for 23 years, but haven't had an attack/relapse for 10 years. But about a year ago I went on disability. Obviously I'm progressing, but without relapses. I've had two doctors say that I am probably SP by now, but they can't be sure. It's important for me to know because Copaxone is not effective for secondary progressive and I wonder if I should stop the shots. Sigh...

  4. Lisa said,

    "From what I've read, the 10-15 year estimate for transitioning into secondary progressive is based on data before the disease-modifying drugs were in use."

    Which makes me wonder why? Why is new data not being published? Is there no new data? If not, why not? In other words, WTF?!?!

    It DOES kind of explain how every MS-related web site is still reporting MS affects 400,000 people in the United States, when that SAME figure was told to me when I was diagnosed in 1998. Seriously? That number hasn't changed? Please...