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Presented by
Pennsylvania Neurological Associates, LTD.
Charles S. Yanofsky, M.D. |
Albert. W. Heck, M.D. |
Jon L. Vickery, M.D. |
Francis J. Janton, III, M.D. |
| Liana Laza, M.D. | |
Janice Morrow, Practice Administrator
108 Lowther Street
Lemoyne, PA 17043
(717) 774-2202
How Am I Doing?
Now that the ‘ABC drugs’ are accepted as the standard of care for MS, clinical researchers are scrambling to find other effective treatments. We desperately need an objective scale to quantify the effectiveness of therapy and follow the progress of the disease. For a follow-up office visit I have two main goals: 1. to strategize about symptom management such as depression and bladder or gait difficulties and 2. Get some idea or snapshot about the progress, if any, of your underlying disease.
The second objective is relatively new. We have, for the first time, a large menu of options when things aren’t going so well. You could change you ABC drug, use Novantrone, add other medicines like Imuran, Methotrexate, use monthly Solumedrol and there are other interventions. But even if things look bad, how do you really know that the MS is getting more active? Your gait might worsen due from a variety of factors, maybe you’re in a temporary exacerbation, or have just had an injury, or a virus or other illness, or injudicious activity, have stopped exercising or have personal issues.
The vast majority of persons with MS start with relapsing-remitting disease, have discreet attacks from which they substantially recover. If you have attacks but seem to recover almost back to normal between these attacks, that is your specific deficit over that time returns to normal, you have relapsing remitting disease typical for the early stages of MS. Over many years the average sufferer will then slowly convert to secondary progressive disease. Actual discreet attacks or worsenings are harder to identify, but disability increases. All the while, the inflammation of MS is continuously active, though to you and your doctor, the progress of the disease need not be apparent or visible.
Many people ask how they are doing with their MS. They want to know where they fall on the wide spectrum of the worst case to the mildest, where they personally fall. Some are curious about whether they’ve, in the opinion of the doctor, entered the secondary progressive phase of their disease yet, as if that were some momentous threshold, which it isn’t, being more of a gradual process. It seems to me both doctor and patient crave some kind of report card, like a serum cholesterol or blood pressure that lets them know how they are doing.
Up until recently researchers were using the Kurtzke Disability Scale in studies evaluating therapy. This ten point rating scale relies primarily on lower extremity function (primarily walking). It’s thus insensitive to meaningful changes that might occur. Some treatments that may have been effective were abandoned simply because studies could not show that patients benefited on this scale, but at least it provided a number for statisticians to play with.
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Another research tool used to evaluate studies is more difficult to use but is a big advance in my opinion. This is the MS Functional Composite. It looks at lower extremity function with a timed walk, upper extremity function with a nine hole peg test, and cognitive processing speed with a timed arithmetic test. It is much more sensitive and at the same time looks over more areas that may be affected by MS. With this tool, it will be easier to evaluate treatments over shorter timeframes. This is not to say that it is perfect either. Your scores may be affected by the temporary effects of an exacerbation, or other factors mentioned above.
The MRI has been a wonderful tool. We can rescan the brain (or spinal cord) to look for an accumulation of bright areas and can even quantify these with exact measurements so it definitely gives us something to measure. The problem is we don’t know what these measurements mean exactly. They wax and wane over time; some of these bright regions come from fluid accumulation and not actual inflammation or damage. The MRI gives us a picture that doctor and patient can compare together if they want, but I always caution people not to take the images too seriously. Most neurologists follow several people whose MRI scans look very bad with enormous bright areas in the white matter, but who seem to have very very mild MS, and several others who have nary a few spots on the MRI but seem to be having a terrible time. We don’t know why. There are good reasons and theories. Research focuses on finding better MRI techniques and there have been recent breakthroughs such as ways of quantifying brain volume and methods for looking at demyelination and axon damage. Stay tuned.
In summary, patient and doctor both would like a scorecard that can be used to gauge MS, especially in this day and age when we have more therapeutic options. We are making good progress in this field.
Back to: www.pneuro.com
Charles S. Yanofsky, M.D.