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Progressive neuro-degenerative syndrome in primary immunodeficiency
Brain & Nervous System | Last Active: Mar 26, 2019 | Replies (4)Comment receiving replies
Hi, @steph73 - thanks for sharing about your son's situation. It is understandable you'd want to connect with others who might provide some experiences and input.
I'd like to introduce you to @hopeful33250 @johnbishop @debbraw and @jenniferhunter, who may have some insights for you as you stand alongside your son with his primary immunodeficiency disorder and his accompanying neurodegenerative syndrome.
Here is some Mayo Clinic information on primary immunodeficiency disorders https://www.mayoclinic.org/diseases-conditions/primary-immunodeficiency/symptoms-causes/syc-20376905.
Since you mention neurodegenerative syndrome, @steph73, is he experiencing symptoms akin to other neurodegenerative diseases like Parkinson's, Alzheimer's or Huntington's disease? What treatment is your son undergoing for his primary immunodeficiency disease?
Replies to "Hi, @steph73 - thanks for sharing about your son's situation. It is understandable you'd want to..."
He receives sub cutaneous infusion of immunoglobulin weekly
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Hi he is experiencing symptoms similar to Parkinson’s and dementia. He has a tremor in both hands, balance and co-ordination issues, his speech has deteriorated and has short term memory. We are in the uk and have been advised there’s no treatment as there is no other cases similar. I have requested a consultantation with mayo as need to do something to help him. He only gets treatment weekly for the immune deficiency.