OMG! I am so sorry you all have had such horrible issues with your neuros and them not helping you or not haveing the knowledge to treat you. I've never heard so many stories like that. 
I did my own research - as I do with all my "stuff" and everyone I know's "stuff" (medical junkie). I let the doc tell me what he was supposed too, did my research, decided the DMD was good, decided some of the extras were not.
Your own research is important, but to have to tell your doc what you should be on is nuts.
Once again, I'm sorry. I guess I am just lucky to have landed with 3 great neuros and gotten adivce from the chief of neurology at Stanford.
Best of luck to you, and I'm glad this forum exists so you can get information about all the meds. UGH, this is frustrating to me.
I did my own research - as I do with all my "stuff" and everyone I know's "stuff" (medical junkie). I let the doc tell me what he was supposed too, did my research, decided the DMD was good, decided some of the extras were not.
Your own research is important, but to have to tell your doc what you should be on is nuts.
Once again, I'm sorry. I guess I am just lucky to have landed with 3 great neuros and gotten adivce from the chief of neurology at Stanford.
Best of luck to you, and I'm glad this forum exists so you can get information about all the meds. UGH, this is frustrating to me.
Comment