LeprechaunSean
Distinguished member
- Joined
- Sep 27, 2012
- Messages
- 131
- Reason
- PALS
- Diagnosis
- 01/2011
- Country
- CA
- State
- British Columbia
- City
- Vancouver
Six Month Lunasin Report
Started on the Duke University\McDuff regimen on Aug 15\2015.
Weight: 181 lbs
FVC: 46%
ALS FRS: 25
For the previous year (Aug 2014 - Aug 2015) I lost about 3 lbs on average between visits to my ALS clinic, so about 9 - 10 lbs for the year. My FVC declined drastically, from 92% to 46% and I lost about 12 points off my ALS FRS score. If you cut those numbers in half my average for a six month period was a 5 lb loss, a 23% FVC loss, and a 6 point FRS loss.
After six months on Duke/McDuff Lunasin regimen, my stats are:
Weight: 190 lbs
FVC: 52%
ALS FRS : 26
I was of course hopeful at first that I would see drastic improvements like Mr. McDuff saw, and after my first weight gain in years and an improvement in my FVC I was definitely excited. After about four or five months though I was feeling disappointed that more was not happening. Last month however I met with my pulmonologist and he stated that I seem to have hit a plateau. So when I compared last years data to this years data I realized that even though I haven't had any major improvements, neither have I declined. I do realize however that plateaus are more common than once thought so basically my conclusion at the end of this six months is that I will keep going with the Lunasin for another six months and see if the plateau continues. Thought some folks might be interested…
Started on the Duke University\McDuff regimen on Aug 15\2015.
Weight: 181 lbs
FVC: 46%
ALS FRS: 25
For the previous year (Aug 2014 - Aug 2015) I lost about 3 lbs on average between visits to my ALS clinic, so about 9 - 10 lbs for the year. My FVC declined drastically, from 92% to 46% and I lost about 12 points off my ALS FRS score. If you cut those numbers in half my average for a six month period was a 5 lb loss, a 23% FVC loss, and a 6 point FRS loss.
After six months on Duke/McDuff Lunasin regimen, my stats are:
Weight: 190 lbs
FVC: 52%
ALS FRS : 26
I was of course hopeful at first that I would see drastic improvements like Mr. McDuff saw, and after my first weight gain in years and an improvement in my FVC I was definitely excited. After about four or five months though I was feeling disappointed that more was not happening. Last month however I met with my pulmonologist and he stated that I seem to have hit a plateau. So when I compared last years data to this years data I realized that even though I haven't had any major improvements, neither have I declined. I do realize however that plateaus are more common than once thought so basically my conclusion at the end of this six months is that I will keep going with the Lunasin for another six months and see if the plateau continues. Thought some folks might be interested…