i am 40 years old. i have been in and out of hospitals the whole entire time. i grew up in the henry fords system i. i have had so many different diagnosis for all my problems that i cant list them all. one doc even accused my mom of using drugs. she didnt. as soon as i could read i searched the medical encyclopedias looking for someone like me. i didnt find it. lots like me were in glass containers. i wasnt ever sure why i wasnt. finally i did get a doc who put all the dozens of pieces together and told me i had klippel-feil syndrome. so i went home and looked it up. it has been the only diagnosis i ever had that everything fit right in. the bad thing for me has been all the studies say prognosis is good with early diagnosis. what do you do when its at almost 39? then i lose my job so i lost the one doc i found to help me to answer my hundreds of questions. so i have been looking for another doc for almost a year now. i hope i get one before its too late. the docs i have are pretty dismissive of it. i have watched how i have deteriorated gradually over the last 7 years. its not fun. its very frightening at times. i know of a few people who have what i do. most dont have the constant medical issues. nobody is over their 60's. its pretty bad to think you might not have a whole lot of quality years left. i still walk with difficulty. i plan to keep going as much as i can. i am most concerned with finding a neurologist who can help me with those issues as they have come up.
i would rather know the truth than not know. my doc thinks its just a bad back problem. it isnt for me. its more global.
i so wish that the docs i had at fords would have put all the pieces together back then so that i could have had all the care i needed from the start. for me i know whats done is done. the docs i had are all dead so i really cant go back and ask. i just wish they would take my old file and look at it from a learning perspective so they dont miss it next time. all the money in the world isnt going to change the outcome or give me back the function im losing.
thanks for listening