so i was diagnosed with type 1 diabetes mellitus. now my doctor is quite positive that i have ALS4, familial form of ALS which is great news, it seems like type 4 is not lethal and very slow without bulbar involvement (it turns out genetic ALS has a connection with endocrine disorders. better yet, bilateral nature of my condition and other symptoms resemble ALS4 , my doctor concluded.) STX1 and PMP22 genes will be tested. yet i am having second thoughts, since this form of als is quite rare and for all i know, this disease is caused by dominant genes and my family has no history with ALS. is it possible that they are asymptomatic, even at this point? ALS4 caused by SETX1 mutation, has onset of before the age 25 but according to studies some cases are observed in form of adult onset.
my doctor is not an ALS specialist but he is the head of the neurology department of one of the best medical school in turkey so i trust his judgement. what do you think? i know it is bit of a limbo but any opinion is welcome at this point, i can not get my head around this! and again, thank all of you for your support, time and interest, this forum is truly a fortune and one of the reasons that i can still stay sane.