Quote:
Originally Posted by ginnie
If you are going to the Mayo in Roschester Mn. there are people on line who rent out rooms for a very nominal cost. I am not sure about this in other states, like Jacksonville Fl. This is what I did, as I could not afford the week long stay I had for testing. Mayo is a wonderful facility, if anyone can help you they can. I wish you all the best. Look on line for Lodging for patients at Mayo clinic. Ginnie
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I'm planning, at some point, to go out there, if they can't get this under control. The new specialist that my neuro wants to send me to is a spinal injury specialist who sees a lot of spastic patients. He's reviewing my file to determine whether he thinks he can help me before setting up an appointment. If he'll see me, I'll put off the appointment in Rochester. If not, I'll have to figure out what to do. My neuro told me her goal is not just to treat the disease (as she could put me on high enough doses of benzos to do that), but to help keep me a functioning member of society.
She said he works with Balcofen pumps and other devices that she doesn't deal with as often as an MG specialist, so I'm hopeful that there are things available she hasn't tried yet.