BlueandGold
Senior member
- Joined
- Feb 28, 2015
- Messages
- 634
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- WV
- City
- Sandyville
Hello all. Had my first clinic visit yesterday at Duke. Bedlack was a gem. So compassionate and caring. Really, everyone was. This was a complete 180 degree turn around from my clinic here in WV. Anyway, I am contemplating participating in their ratigabine study which is due to start the end of September. They did tell me however:
1. I must stop taking B12 injections
2. I cannot start the Lunasin regimen
3. I have to go to the clinic every two weeks for 2 days at a time for 10 weeks
4. No guarantee that I will not be given a placebo
5. At the end of 10 weeks, the dosage is stopped - no more retigabine (even if symptoms improve)
6. No compensation or help with travel expenses, etc.
7. If I participate in this trial, cannot participate in any other drug trials
Since I am 6 hours away from the clinic, I just don't know if I have the stamina to do this trial. Also, after the 10 weeks, who knows how long it would be before they might allow this drug to be given to ALS patients and by that time, I may have progressed to the point that it wouldn't help me, let alone the cost of the hotel and travel and meals every two weeks for 10 weeks. Not sure what I should do but still considering.
By the way, Bedlack did not seem too enthusiastic over the Lunasin. He did say McDuff was only one patient and that he had suffered from Myasthenia Gravis back in the 70's so not sure how his variables are accounted for. Also, he completely dismissed the B12.
Best to everyone.
Vince
1. I must stop taking B12 injections
2. I cannot start the Lunasin regimen
3. I have to go to the clinic every two weeks for 2 days at a time for 10 weeks
4. No guarantee that I will not be given a placebo
5. At the end of 10 weeks, the dosage is stopped - no more retigabine (even if symptoms improve)
6. No compensation or help with travel expenses, etc.
7. If I participate in this trial, cannot participate in any other drug trials
Since I am 6 hours away from the clinic, I just don't know if I have the stamina to do this trial. Also, after the 10 weeks, who knows how long it would be before they might allow this drug to be given to ALS patients and by that time, I may have progressed to the point that it wouldn't help me, let alone the cost of the hotel and travel and meals every two weeks for 10 weeks. Not sure what I should do but still considering.
By the way, Bedlack did not seem too enthusiastic over the Lunasin. He did say McDuff was only one patient and that he had suffered from Myasthenia Gravis back in the 70's so not sure how his variables are accounted for. Also, he completely dismissed the B12.
Best to everyone.
Vince