Currently in Tovaxin IIB Clinical Trial
Currently in Tovaxin IIB Clinical Trial
I have been accepted in the Tovaxin Phase IIb Clinical Trial. I have created an online journal that will track my progress during the trial. You can view my online journal here http://blog.360.yahoo.com/pvns2005 . If you have any questions for me you can contact me through Yahoo IM or Yahoo Email. My Yahoo ID is pvns2005.
- CureOrBust
- Family Elder
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- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
Bob, I know this isn't the focus on this thread, but the EDSS you described for your wife was surprising and alarming. I would have thought 3.5/10 would entail some obvious impairment. I'm wondering whether I should ask for a more thorough exam, no one has ever suggested an EDSS level for me, I assumed I wasn't even on the scale. Are you sure, err, that there wasn't an effort to find a higher EDSS than might otherwise have been noted? (I'm assuming neuros were part of clinic selected for trial)
Last edited by ljm on Sun Nov 19, 2006 10:12 pm, edited 1 time in total.
- CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
Write down her failings in the exam the nuero gave her, and repeat it yourself, even video it if you can. You may be able to see the change over time. The video will keep it more controlled. just an idea for your own comfort.Lyon wrote:At any rate, we aren't going to be able to notice obvious changes because she has no obvious disability.
The 3.5 EDSS for someone who doesnt appear to be impared does sound high. One of the complaints of the EDSS you hear, is that it tends to weigh more on walking.
CureOrBust wrote:Lyon wrote:
The 3.5 EDSS for someone who doesnt appear to be impared does sound high. One of the complaints of the EDSS you hear, is that it tends to weigh more on walking.
Here our Neurologist splits it up John is 0 for mobility but rates a 4.5 for his eye(optic neuritis). The Dr. says it's impossible to combine the 2 as the EDSS was meant to measure mobility really the eye he seems to consider a mere nuisance.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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