1. Michelle Deciantis Michelle Deciantis United States says:

    I am currently still in a definative diagnosis phase, 13 yrs and thought to be hereditary Ataxia and Upper Motor Neuron disease of unknown origin or type.  I am in a clinical trial at NIH for exome sequencing looking at other options such as, HSP etc.  The pain (neurogenic as per my doctors).  Has got to be one of the most difficult.  With Lyrica and Oxycodone, I still live daily with a 4-5 pain level.  And too many Neurologist do not understand this pain is much different than typical pain.  I mean I have the sensory deficits and neuropathy in both lower extremities.  But the neurgenic pain is systemic, relentless, and I am praying they can find something within the CNS, a main shut off valve of sorts.   Thank you for continuing your research.

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