I had no peripheral reflexes for 15 yrs, but many visits to neurologists only told me that I had a pyshosomatic disorder. I gave up trying for years to work with drs after that and took the progressing neuropathy into my own hands, teaching my self balance patterns while swimming, skiing and walking. All the while, my symptoms progressed slowly. I had to quit yoga classes because I kept falling over and getting fatigued in the middle of a class, so I tried Tai Chi. That was also a gong show.
5 yrs ago I developed memory problems in addition to my psychosomatic balance and reflex issues. I tested positive for lyme disease and 3 coinfections with and ALS presentation. After 2+yrs of agressive treatment, I was sent to another neurologist who finally dx’ed me with CIDP. My insurance co refused to accept my dx and denied treatment for 21 months. During my fight with the insurance co, I developed autonomic symptoms, including breathing, GI, swallowing and seizure problems.
I’ve been on IVIG for 2 yr, and have made great improvements, but am currently rallying from a trial decrease in dose which allowed more disease progression.
So, all in all it took somewhere around 15-20 yrs to get a proper dx and treatment.