Progressive neuro-degenerative syndrome in primary immunodeficiency

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?

Hi, @steph73 – I have no experience to share with your son's symptoms but I was able to find a few articles that may provide more information for you.

Progressive neurodegeneration in patients with primary immunodeficiency disease on IVIG treatment.
— https://www.semanticscholar.org/paper/Progressive-neurodegeneration-in-patients-with-on-Ziegner-Kobayashi/ccab584874683080dc473cd8bace25b1bf902efb

Neurologic Involvement in Primary Immunodeficiency Disorders
— https://journals.sagepub.com/doi/abs/10.1177/0883073817754176

Neurological Manifestations of Primary Immunodeficiencies
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6045935/

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.

He receives sub cutaneous infusion of immunoglobulin weekly