I have gone through one and a half treatments of IVIG in the beginning, wound up unconscious, septic, with a kidney stone, from a UTI. trying to determine if it is worth trying infusions again . At first , the first round seemed to help, until the kidney problems. Neurologist stopped treatments because he thought it was to aggressive. I am now seeing new neurologist with some CIDP experience. Last one had no patients with the disease.
Left last neurologist because of a comment he made to my wife , " just try to make him comfortable " HOWS THAT FOR HELP AND ADVICE ?
EMG and spinal tap was used to diagnose me , along with symptoms that have presented themselves
New neurologist wants to redo testing including MRI of head and spine and another round of EMG's
Not sure of what to try next........ dazed and confused
It's been two years since first diagnosed,i am on Prednisone, not getting any better , nor any worse as far as I can tell, besides the neuropathy in the hands and feet and the fact that I am still wheelchair bound.( can not walk)
I know I have to consult with new neurologist , does anybody know if there is a re-occurrence of kidney problems with on and off IVIG treatment? I would hate to go through the whole kidney thing again, I almost did not make it through that , like I said , septic and unconscious for a week in the hospital.
Also not very fond of hospitals, I am a full assist and they are not very helpful, unless you can get the PT department to send someone down to provide help with movement , weather its to the wheelchair or assist getting on the commode