03/25/2022
The call with Dr. Kolb was absolutely amazing! He explained the clinical trial process and wanted to see Jacob to check him for the possibility of SMA s(pinal muscle atrophy). We were hopeful that the ALS was a misdiagnosis, since SMA behaves the same, but is now treatable. Truthfully, this was a longshot, but Dr. Kolb wanted to examine Jacob in person. He explained that Jacob needed to be on one of the available ALS meds for 30 days before we could start the clinical trial. Available medicines were Riluzole, Radicava or Nuedexta.
Dr. Hollinger recommended Riluzole. He felt Jacob would tolerate it much better than the alternatives.
Dr. Kolb explained that his administrator would be in touch with us to schedule our appointments.
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