Thanks, your comments are helpful. 😀

Mom has had at least two different neurologists look at her. To date, I believe she has had MRI, Spinal Tap, various nerve tests, a cart load of blood tests. I was under the assumption that the spinal tap would be the definitive test, but the doctor said it didn’t show anything….the language upsets me. I have to rely on my dad to share information with me in Calgary….he is older and of course, it is tough when he is quite worried about my mom.

The doctor said it is too late for any of the blood treatments. It seems to me that they are just observing her now. Either she will improve or she won’t. I want to scream at someone and say…”Who is the leader here?”….”If you can’t figure it out, let’s get someone in here who is the EXPERT on this syndrome”….But, there is a fine line between being too pushy and trusting the doctors to do their job.