All in all Jim's appointment went well. They still do not see any muscular atrophy so his diagnosis is Motor Neuron Disease (MND). The difference is the part(s) of the neuron that is affected. Jim's is upper neuron - affecting the part that controls the nerves & reflexes. ALS also effects lower neurons - or muscles.
He will have a PET scan scheduled when our insurance approves it. He had 7 tubes of blood drawn for testing today. He will follow-up with both neurologists in December and have his driving re-evaluated around February. He will most likely have a spinal tap in December. There is concern this may be hereditary since his maternal grandma had PSP (another neuron disease) and with his mom passing so young she may not have developed symptoms if she had it. (Early on set is 50, she was 46 and Jim is 36).
He is up to 8 pills a day & 1 powder supplement- his ADD meds (which he was on), a medication to reduce the rigidness in his muscles & help his walking (3xday) and a natural supplement "cocktail" = vitamins C & E, Selenium, Creatinine and Alpha-lipoic acid. These are supposed to help protect the neurons and hopefully slow his progression.
Though he may still progress to ALS, the prognosis for MND may be more favorable. It is not 100% fatal in all cases. However now the future seems more "sketchy." But we'll take it!
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