Hi Winic1,

It's a little awkward when doctors refer you to a University hospital for another opinion. In my experience, yes, they do often wait to hear how that appointment goes before they see you again. However, if you are having trouble, you should call your local doctor. Generally, you end up keeping both doctors, if you will be seen at the University. You might see them occasionally, but you will see your local doctor on a more regular basis. When you finish an appointment, you need to ask the doctor when you should make the followup appointment. Ask what the doctor's policy is, and when you should be in touch if you have any concerns about contacting the doctor. Ask what symptoms should prompt a call. I would say generally if you notice increasing weakness, more trouble breathing, more trouble swallowing - either call your neurologist or get to the ER.

I am seeing my neurologist quite frequently right now, but I have had a lot more issues lately. I am seeing her about every 2-3 weeks. I also know I can call her, and she would do her best to get back to me, but if it were a serious issue, I should just go to the ER. It's hard, but I do have to communicate with the doctors' offices regularly. It's often the thing you least want to do when you feel unwell, but you have to do so if your symptoms are giving you difficulty.

Take good care of yourself, and hang in there!

Take care,
Erin