My father was diagnosed with HNPP over 30 years ago. After reading about some of the symptoms when I was younger (finger numbness after using scissors and carrying plastic bags, numb toes from high heels, etc), my sister and I felt we had it too. We weren’t concerned or affected enough to see a neurologist.
Then on June 6, 2011 the complete right side of my body head to toe went weak, tingling, and mildly numb. My balance was off. I felt like my head and feet weren’t working together properly. I had trouble thinking clearly. I’d use the wrong words. Even my vision was mildly affected. After waiting 10 days I went to see my doctor (waiting = not a good idea) I had a MRI to rule out a stroke. The MRI revealed a large amount of white matter brain lesions. My regular doctor called to tell me I had MS. I was referred to a neurologist. Then MS was ruled out. I was tested for anything that could cause white matter brain lesions. All the tests were negative.
After a year of getting no answers I was frustrated. I had to see three different specialists before one connected the fact that my father has HNPP to my brain lesions. The doctor found a study done about the connection of white matter brain lesions and HNPP. A neuro-radiologist confirmed that my lesions were in the exact same area of the brain where the subject in the study had hers. I was given a nerve conduction test. It was positive for damage. Then I had a positive DNA test for HNPP. Since my HNPP diagnosis I’m now being treated for peripheral neuropathy and autonomic dysfunction. Thankfully some of the thinking issues have cleared up. The HNPP diagnosis made me realize how many of the health issues I had/have are related to HNPP .