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Old 02-21-2008, 11:27 AM
countrymom countrymom is offline
Junior Member
 
Join Date: Jan 2008
Posts: 28
15 yr Member
countrymom countrymom is offline
Junior Member
 
Join Date: Jan 2008
Posts: 28
15 yr Member
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Ada, It helped with all of it. For the first time in 11 months I was able to take a shower and a bath with hot water. Before that I propped my foot on the side of the tub as I could not stand the feel of the water. I was able to cook for my family and clean my own home. I was able to drive again and walk through all the stores without my scooter or my cane. I walked the entire border of our 10 acre farm! I was able to eliminate the Vicodin, I needed regular Tylenol every now and then. I still continued the Neurontin and the oral Ketamine. I could sleep in bed with the sheets and blankets on my foot. I was able to wear tennis shoes and boots again. Breezes and ceiling fans no longer bothered me. I even started wearing crop pants and walking barefoot in the grass. My favorite pasttime, never knew how great that feel is until you can no longer do it! My toes which were frozen and pointed up began to bend. I still have a problem with my big toe bending but the other 4 bend normally now. I needed no blocks or changes in meds for 3 yrs after the study. It has only been in the last year that I have needed the blocks and have had additional meds added to control my pain. At the end of the study you are able to choose which med you would like to continue for an additional 5 weeks. Of course no one knows what you are taking, however, you cannot have any doubt when the improvement is so drastic and is documented through your physical exams that they give you. They gave me the paperwork to get an IND number through the FDA so I could obtain the med under the Compassionate Use clause. The med costs $80.00 from the manufacturer. Unfortunately, even though the liason tried to work with the doctor I had at the time I was unable to get the doctor to follow through. To this day I have not been able to get any physician to do this for me, liability I guess. This med has been used in Japan for over 20 yrs for shingles, back pain and several pain conditions. It is not addictive and has very few side effects, I experienced no side effects. I was told that 2 people who were in the study were able to get it, however, they are nurses and had a doctor friend who did it for them. The other person is from Canada and they were able to get it also. I sure would like to know if anyone out there knows of a doctor who would be willing to do this for me. I will travel anywhere, even on a regular basis, just to be able to get this again. I have all the paperwork. The only thing I am missing is a physician who has enough compassion to take me and fill out the paperwork. Like I said, I will travel anywhere, even monthly, please if anyone can help me would you please let me know? Thanks for asking and thank you to all who are willing to help me. Marilyn
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