I have neurosarcoidosis. It has worked me over pretty hard. In the last fifteen years I have been on various meds and cocktails. This was prescribed to me and insurance approved it, medicare did not. I was put on a patient assist program where the company forgave the 20% not covered by my insurance. After taking it for a month insurance had a coniption fit when they found out the cost.It was $55,000 a month. They quickly denied coverage. I wasn't on it long enough to know if it helped or not. I should say though medicare is my secondary insurance. They are having lots of luck with it's use on MS patients.

More to the point, there are lots and lots of conditions, diseases, whatever out there that you'd never know about if you weren't directly affected.

Consists of a sudden stiffening of the body, arms and legs and head bends forward.
Each seizure lasts only a second or two but usually in a series.
Most common just after waking up and rarely occur during sleep.
They typically begin between 3 and 8 months of age. Almost all infantile spasms start by 12 months of age and usually stop by 4 years old.
Steroid therapy and the antiseizure medicine Sabril are the primary treatments.
Most children have developmental disabilities later in life.
Many children develop other kinds of epilepsy.

https://www.epilepsy.com/learn/types-epilepsy-syndromes/infantile-spasms-wests-syndrome-and-tuberous-sclerosis-complex