I so appreciate all your responses!
Em’s Mom, I am not sure what dose she must be getting. My treatments started at 40 and then slowly taken to 60 and taken no higher (after learning a higher number caused problems), takes me almost 6 hours. As I understand it,my maintenance treatments will be single treatments, and they will be a higher dose. If my dr. Had been in town I would have been pre medicated and it would have gone so much better. Once we forced the nurse to get an oral thermometer and they learned how high my fever was,the dr, in charge went to the pharmacist who told him they should pre medicate me with benadryl and Tylenol. I was inpatient for five days for the five treatments.
My friends daughter, who had gbs, was treated with two treatments a day, two days in a row, and a final one the third day. I suppose as that is a more acute form, they may have been more aggressive and or lowered the dose.
The disabling symptoms started last October. They have gotten progressively worse, accelerating the past few mos. at a scary rate. However, the neuro that i am seeing specializes in neurapathy and my nerve conduction tests lead him to believe that only the myelin has been damaged, not the actual nerves.
I don’t feel as if I have lost much in the way of coordination, etc but I do plan to go to physical therapy, I have the orders already. I had stopped driving voluntary but I think I can resume now. I can lift my legs again.
One thing, I expect pain to accompany recovery of the nerve conduction. Is that correct?
Ty Ty Ty! Jan