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Rolepaul · 08-13-2012, 06:18 AM

Lani,
I agree on a test using a blood sample, urine sample, or even a spinal fluid sample would be great. We saw markers and cells in the blood and CFS for Nina (and we saw them clear in the tests as well), so we know that there is something on the horizon. And I mean in the next two or three years. The brain MRI every two years is just to get those currently with disease to that point. The three node concept is a good starting point until these tests get in place. I was on the first PSA five minute test kit manufacturing team. I know what it takes to get a test to be widely accepted. We are doing CPR on a patient that has had a heart attack, trying to keep them alive until they get to the hospital coronary care specialist. I plan on keeping pushing until something better can be put in place, and than I will support that. We could run protein and glucose on CFS samples for at risk women and that would keep us from doing unneeded MRI scans or as a backup for not having MRI scans available. Tests are under $50 and pulling a CNS sample can be done by a good RN. But will it detect the lesions under 2 cm that it needs to? I can give lots of reasons why we did the course for Nina, and the cost was financially very high. I will tell you that Nina's case opened my eyes to this matter and I would never have gotten to this point without her disease occurring. At the same time, it has become personal and I think I have a good background to get direction for progress in diagnosis and treatment going. I would love to have the "Magic Bullet" of the mid-1980s Monoclonal Antibody go from everywhere but the CNS, to now include the CNS. CNS HER+ involvement does not need to be an end of life situation as the many participants here can tell you. Research will help those in the future, I want to help those that find out they have the disease now.

08-13-2012, 06:18 AM	#19
Rolepaul Senior Member Join Date: Jan 2012 Location: Boulder Colorado as of January 2013 Posts: 389	Re: Question? Lani, I agree on a test using a blood sample, urine sample, or even a spinal fluid sample would be great. We saw markers and cells in the blood and CFS for Nina (and we saw them clear in the tests as well), so we know that there is something on the horizon. And I mean in the next two or three years. The brain MRI every two years is just to get those currently with disease to that point. The three node concept is a good starting point until these tests get in place. I was on the first PSA five minute test kit manufacturing team. I know what it takes to get a test to be widely accepted. We are doing CPR on a patient that has had a heart attack, trying to keep them alive until they get to the hospital coronary care specialist. I plan on keeping pushing until something better can be put in place, and than I will support that. We could run protein and glucose on CFS samples for at risk women and that would keep us from doing unneeded MRI scans or as a backup for not having MRI scans available. Tests are under $50 and pulling a CNS sample can be done by a good RN. But will it detect the lesions under 2 cm that it needs to? I can give lots of reasons why we did the course for Nina, and the cost was financially very high. I will tell you that Nina's case opened my eyes to this matter and I would never have gotten to this point without her disease occurring. At the same time, it has become personal and I think I have a good background to get direction for progress in diagnosis and treatment going. I would love to have the "Magic Bullet" of the mid-1980s Monoclonal Antibody go from everywhere but the CNS, to now include the CNS. CNS HER+ involvement does not need to be an end of life situation as the many participants here can tell you. Research will help those in the future, I want to help those that find out they have the disease now.