Feeling a little worse or noticing new aches and pains before feeling better is certainly not the case with the vast majority of people involved with this study.
However, each of us is different and as with any treatment or therapy, there is an initial adjustment period within the first month or so. This can cause backache and a stiff neck. Also muscles may tighten and ache as if you have been working out in a gym.
When a person with a neurological condition like multiple sclerosis or spinal cord injury is experiencing an increase in pain, the person could perceive that an initial worsening is occurring. However, if a nerve pathway is to become functional it has to carry bad messages as well as good messages to and from the brain. For example: Personally, I experienced pain in two areas of my mouth and a visit to the dentist confirmed that there were two cavities below the gum line, which had been there for several years. I asked why I had not experienced pain before from them and he replied that the nerves in the teeth often cease to function and this is why people with severely damaged teeth experience little to no discomfort. He also pointed out that when we age our taste and smell senses can become less effective due to the same degenerative processes.
During the first pilot study into multiple sclerosis, some people found that food began to taste better than before they began the study. For some, this meant an increase in eating habits and lead to an inevitable weight increase.
If we are truly seeing the reversal of neurological conditions, one should expect some pain before a gain. It might be worth considering that one could go back through MS by way of a reverse of its onset, which could mean experiencing both positive and negative symptoms, which have not been experienced for several years.
The pilot study showed this to be the case and many people experienced increased pain and /or spasm, tingling, pins and needles, hypersensitivity, burning and even visual disturbances, prior to regaining either a function or an increase in sensitivity.
"This was also the case with complete spinal cord injury, which to all accounts should not be possible. Four months, appears to be the time it takes for nerves to begin to respond in SCI's and CP MS. I see no reason why ALS should not follow this pattern.
Unexpected weight gain.
Several of us, including myself, found that we gained around fourteen pounds over several years, but with a big difference to normal weight gain, our clothes fitted better and even became loose, which meant we had increased in weight but decreased in size. The only reasonable answer is that the extra weight must have been an increase in fluid, bone and muscle density. This appears to be backed up by experiences while swimming and one complete recovery by a lady with osteoporosis of the spine.
Another consideration is that people seldom complain about feeling well and usually realise on reflection that something has improved. However if an increase in pain comes along, then all focus is usually on the pain, which should pass within a short period.
Some people sleeping on an incline, during the pilot study experienced relapses, but there were notable differences, by way of a reduction of severity and duration. It was also noted that previous relapses resulted in a net loss, whereas inclined relapses showed no net loss of either function or sensitivity.
We are winning this battle! But please send in those vital reports, the war has only just begun!