Monday, June 4, 2007

MS and Me - Current Perspective: 2007

It is now June 2007. In March, I was told that I am transitioning from 'relapsing remitting' MS to a 'secondary progressive' form of MS. When I was in 'relapsing remitting,' I experienced major attacks that would eventually go into complete or nearly-complete remission as I described in my previous posts (please refer to the archives to see the complete story). With secondary progressive MS, I am experiencing a gradual decline in functionality. My right leg is getting weaker and my foot drop is more pronounced. Of course I could just blame that on the fact that the fatigue has gotten so bad that I gave up exercising. Or it could be the MS lesions in my spinal cord are interfering with electrical connections between my brain and my leg (another short in the cord). Or maybe I was abducted by aliens who forgot to remove that little silver nano-probe again.

I just picked up an ankle foot orthosis (AFO), which is a plastic brace molded to my lower leg and foot that will prevent tripping. I'm still getting used to it, and it needs a few adjustments due to some tight spots, but has helped quite a bit. I can't wear sandals or pumps with it, so my wardrobe options are a bit limited. But I still have my fashionable canes to help when I have trouble walking and can't wear the brace or the strap to keep my foot from dragging.

I finally gave in and obtained a handicapped parking placard. I use it on days when the fatigue is threatening or my leg is rubbery. I don't want to become a handicapped placard abuser and use it just because I can! But sometimes I can't find a handicapped spot because people who don't really need them are squatting just to get a better spot at the mall. If only they new what it felt like to lose the ability to walk...

I also am giving a fatigue medicine a second chance. So far, it is working but has a side effect of insomnia. So I have a second medication to help me sleep. I feel like Alice in Wonderland when she fell down the rabbit hole. She discovered one bottle marked "Drink Me," which she did and the potion made her very small. Then she discovered a cake marked "Eat Me," which she did and then grew very large. I have one pill that makes me sleep and one pill that makes me awake.

I think this can only be described by saying that this disease just gets "Curiouser and curiouser!" here in MS wonderland.


  1. Joanie - I've learned a lot about MS thru your writtings. As well as learning more about you! Keep writting please.....because as you write, the closer I feel to you, sis!

  2. Joan. . .I've only read the most recent 'blog' (my first, by the way) and I can't believe how similarly our lives and darn diseases have progressed. We MUST talk. No matter how much time passes, you are in my thoughts often and warmly. Have to go. . . to read more....Sara

  3. Hello!

    I found your blog from your comment on's nice to meet you! I also had one of those foot-drop-thingies in 12/06...kept me from doing face plants on the streets. At least when I was sober anyway. LOL

    Linda D. in Seattle

  4. Joan,

    Such beautiful writing. I certainly hope that many readers find hope, encouragement, and compassion in your journey. I did.

    I remember vividly two mornings in March 2000 when I feared going blind. With such extreme near-sightedness, my eye doctors have always warned me of the signs of a detached retina. On that Monday morning, something just seemed a little off and I went to see the opthamologist who could not determine that anything was amiss.

    The next morning when I put on my glasses, it seemed someone had smeared them with vaseline. I began sobbing as I just KNEW something was wrong. This time the doctor agreed.

    He called ahead to a Retinal Specialist who determined everything was fine in that department. Then this doctor called ahead to a neuro-opthamologist who fit me into the schedule that same afternoon. (It's amazing what can be done when you DO NOT have health insurance.)

    This doctor put me through an exhausting visual fields test and conducted a thorough examination. But when he took the red cap from a eyedrop bottle and asked me what color it was while looking straight ahead and then as he moved it into my periphery, I nearly jumped out of the seat. I wondered how in the world he swapped the red cap for a brown cap and I had missed it.

    He said words like optic neuritis, lyme disease, possible brain tumor, nerve inflammation, and multiple sclerosis. He ordered bloodtests and MRI to help determine which of the above was the most likely culprit.

    By far, the kindest thing he did for me that day was to tell me that my vision would get much worse before it got any better. I had acted so quickly on the threat of a detached retina, was seen by three different doctors in three different offices in three different cities on the very same day, and could still SEE through the growing fog.

    The vaseline covering my eyesight quickly turned opaque gray and stayed that way for two months before my vision returned. Today, light shines more dimly in that eye versus the other. But I am most fortunate that vision did return, the MRI showed inflammation of the optic nerve but "no evidence of any demyelinating disease," and I went five years without a significant enough incident to remind me that yes, once, a doctor had mentioned the words multiple sclerosis to me while sitting in a neurology office.

    Thank you Joan. I will most definitely include a link to your story in the blog carnival.

  5. Thank You Joan , I am lucky enough not to have MS but my wife Callie does, I think you pop over to her blog from time to time.

    I have read through your essays and learnt so so much and although scary feel happier to have a better understanding of so many of Callies symptoms.

    Callie and I are lucky that she is in to blogging and the times when she posts for help and advice on something that is troubling her and those with much longer and better understanding of MS iether put her mind and mine at ease or force us to make a decision and seek professional help .

    So not only must I say thank you for great essays but also to the fellow MS sufferers who help each other including Callie


  6. Hi Joan,

    It seems you and I have been along some of the same paths, although you are younger. When the possibility of MS was first mentioned to me, it was 1978 and I was working for DOD in an army medical hospital. Since I was doing medical transcription and had all of a sudden found myself unable to type (yes, really type) without making typos when I had been first in accuracy and speed the year before, I finally had to leave that position and was offered no other position because I had MS. This was the way it was at that time. There were no MRIs but lots of spinal taps, no drugs for MS, not even for the spasticity.

    Luckily, I had your Maybe MS and had years of just minor relapses, mostly involving the eyes (double vision, inability to focus). I continued working in the medical field still transcribing, much easier with computers, finally began working at home, then part time, retired at 69 at the end of last year as I have, like you, gone into secondary progressive MS.

    Am still using canes, but only for short distances and have to use a motorized cart for any shopping. Driving became impossible due to vision a few years ago. So my world is shrinking but I am grateful for my laptop, my music (classical and jazz), my books, and some TV. Would love to hear from you at