The Neuronata-R stem cell treatment is intended to slow ALS progression. Of course the hope of any ALS patient trying a promising treatment is that there is an easily perceptible change, either in the form of a pause in progression or a minor reversal, even if only temporary. I wanted to wait until a few weeks after the second injection before commenting on any results to make sure I gave the stem cells a fair opportunity to take effect. Unfortunately, based on the activities that I do regularly (such as the elliptical), I am not able to detect a change in my progression rate. I know that this doesn't mean that the cells aren't effective in some capacity, but I was obviously hoping for a perceptible impact on this disease.
I've heard from a few patients who have seen improvements from this treatment, so it leads me to wonder why them and not me. My doctor has described my particular flavor of ALS as Upper Motor Neuron (UMN) dominant, meaning that the bulk of my symptoms are the result of degradation of my upper motor neurons rather than lower motor neurons. There is a good article explaining the difference here, but basically upper motor neurons carry muscle contraction signals from the brain to the spinal cord, and lower motor neurons carry those signals from the spinal cord to all the voluntary muscle fibers.
I would expect intrathecal injections of stem cells in the cerebrospinal fluid surrounding the spinal cord would be more effective at slowing, halting, or temporarily repairing the degradation of lower motor neurons than upper motor neurons, as the lower motor neurons would have much greater exposure to them. If the muscle contraction signals coming from the brain can't make it to the lower motor neurons (or are degraded) because the pathway in the upper motor neurons is damaged or compromised, then repair or improvement in the lower motor neurons won't improve those signals, and little to no symptom improvement would be apparent to the recipient. In a sentence, this is the theory I am proposing:
The more biased an ALS phenotype is toward lower motor dominance, the more effective a treatment by intrathecal injection of mesenchymal stem cells into the cerebrospinal fluid will be.
I'm not a doctor, and this theory is not currently supported by any data that I am aware of. Given that this method of treatment (grouping Corestem's Neuronata-R and BrainStorm's NurOwn together) is relatively new and has limited availability this should not be surprising, but I will be researching this over the next few weeks. I do know that a number of ALS patients who received stem cells in Corestem's clinical trials were considered non-responders, and given the expense, invasiveness, and travel burden of this treatment it would be beneficial if the treatment benefit expectations could be predicted with better odds than random chance. Of course this is ALS, and even if I were given low odds of a successful outcome I would have still taken the chance. I will be forever grateful for the opportunity and the financial support from all the donors that made it possible.
So now what? If my theory is correct, then I need to focus on stopping the deterioration of my upper motor neurons. That's a tall order but if I can do that then perhaps a second cycle of Neuronata-R would be of more benefit. After researching several supplements and medicines I am adding ones that should benefit my upper motor neurons to the NeufStrong Protocol.