Any help in Central FL?
AnonymousSeptember 12, 2010 at 6:40 am
I was wondering if anyone can help with my mother. She has been in the hospital since July 3rd and she is on a respirator, feeding tube and is completely paralyzed except for her eyes and tongue movements. The doctors did not test her for GBS or CIDP until I asked them to after a month of her being parlayed. They tested with an LP which confirmed high protein levels in the CSF and started a round of 5 PE treatments over a 10 day period. She nodded her head for the first time in over a month and was able to open her eyes all the way. I was so excited. Then they said that treatment was over and she quickly started to decline and within a few days was back to no movement and barely any ability to open her eyes. I begged for another treatment and the doctor’s said that if she has GBS another treatment should not be necessary. I had to beg to get another round and after awhile the nephrologist said OK to one more only. She got an additional treatments over 10 days and not only nodded, but moved her thumb and one other finger. The doctor’s then said that is all that they would do for her, cleared her from their care, and moved her from ORMC hosptial in Orlando to an acute care facility where she is not seen by a neurologist and has slowly gotten much weaker since her last PE treatment about 2 weeks ago. The doctors told me that nobody gets multiple PE treatments, but after reading your posts I can see that many people rely on these treatments for the rest of their lives and if they work for my mom then why can’t I find a doctor to give her a chance with multiple treatments. Does anybody know a good neurologist in Central FL? Can anyone help my mother? Please???
AnonymousSeptember 12, 2010 at 2:38 pm
Try this, go to the main forum page. Look up GBS/CIDP foundation. Click & scroll down to characters. Select your state & it will give you characters in your area, which should be able to help you find a local neuro doc for GBS/CIDP. They probably will also have recommendations.
So sorry your Mom has this. Welcome to your GBS/CIDP family. You are in my heart & in my prayers. We are all praying for you.
Good luck. God Bless you.
AnonymousSeptember 12, 2010 at 8:01 pm
I sent you an email from the forum. I’ll try to help but I don’t know if it will be enough. I have CIDP and was never hospitalized like your mom. I have been in a remission for eight years and have not needed to see a neurologist for eight years. I have only lived in Florida for two years and my only doctor is my PCP.
Sometimes I do searches for the “what if’s” though. What if I start progressing again and need a neurologist.
I’m doing searches for you. I’ll be in touch.
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