Found out that the neurologist in Chicago gave me a 4 on the EDSS. This is up from 2.5 in June.
I have pretty mixed feelings about this number. First, it definitely correlates better with the new symptoms I've been having lately than my MRI. But on the other hand, I don't feel like I'm that bad! As far as the study goes, this clinical trial definitely is unique in many ways. First, the only blinded person is the neurologist. Everyone else, including me, knows what group they're in. Pretty hard to placebo a stem cell transplant. Second, for those of us in the control group, if our EDSS number goes up, and stays up, there is an option to cross over into the treatment group.
Since my number went up, if it is still up in 6 months, I'll have the option to transfer into the treatment group and receive the stem cell transplant. We'll see what happens. Until then I'll continue my monthly Tysabri and go back to Chicago in 6 months.
2 comments:
Wow. Other than your symptoms, what does the neuro look at to determine your number?
The EDSS is based on different functional systems, and goes from 1-10 (ten being death). I think my new urinary symptoms is what really made my number go up this time. Most of my other symptoms are sensory (numbness, tingling) and I'm still fully ambulatory.
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