YES. Good God, go to the Mayo Clinic. I was in Boston and went to Mass General and Spaulding. That's like asking, "I'm spending the summer in Maine, should I have lobster?" (Well, almost)
I had more than one IVIG treatment and I can't tell you a thing about it because I was in a coma at the time of both treatments. I do own a copy of my 9,000 page medical records- something I recommend to all- so that I know exactly what was done. But it is true that after a certain amount of time additional IVIG is a waste of time.
I too have grown worse. I too have a hand hewn walking stick, though it was made by my great great great grandfather. In 2005-2006 when I was in the hospital with GBS I was told a lot of things that, at first, I believed. It is MOST important or you to know that at this point you could well know more about GBS than your doctors do.(I have learned that the less flexible and the less collegial the doctor, the more imsecure and the less schooled on the subject). I was fortunate in that my physicians used both my experience and willingness to study to help them to learn and to help them to prepare for future patients.
The bottom line, in my opinion, is that if you do not feel comfortable with this doctor; if you do not feel this doctor is really listening to you or serving you well; if this doctor is making you feel insecure then you owe it to yourself to seek different or additional care. Your relationship with your medical providers is going to become a regular and non stop oart of your live for the rest of your life.; And if you end up using controlled substance medications, as laws progress, you will be seeing doctors at LEAST once a month even long after those days of four to six appointments per week.
I've lived with the residual effects of GBS since onset in the summer of 2005 and I have been told that I will not get better; that I should only expect to get worse. I do not have the money or the facilities to provide myself with the care I need and most people do not. (or example, we ALL would do well with a heated in ground, covered for winter pool)
It is the fatigue (a ludicrous word) that has rendered me dissabled. I would gladly go back to my career with the severe pain, the balance issues, the loss of finger dexterity- I cpould deal with ALL of that. But "fatigue" is soimething that strips one of all power and control. How can one work if he is trapped in bed, unable to wake up and knowing that a four hour wstint of work is enough to leave one bed-ridden for many many days.
The consistent part of GBS is it's inconsistency.
So much of what you have said rings very true to me. I wonder what sort of treatments and care you have had; if there are any that I've had that may help you; if there are medications; foods; remedies; zen; chi; witchcraft; methods of amusing yourself; depression; careegivers- anything at all.
I love your city; I worked there three times, once at the Guthrie, again at the Orpheum and then at Univ of Minn/ Ted Mann. All three were short projects, less than three performances each but I had a wonderful time. Walking along feeling amazed that I could get from my hotel to rehearsal space and tyhen to the performance hall without actually going outside; a city of hamsters in tunnels. Then in summer just ass beautiful outside.
Anyway, I hope I've helped. Give me a shout if you want more help. ■■■■■■■■■■■■■■■■■■■■
Dave Seaman