Anyone have any input Nero said my Csf came in high end normal. My Ataxia is gone but all other symptoms are there. Back pain, tingling, peripheral Neuropathy blah blah. She treats Cidp but won’t Dx due to Csf although she is pretty sure that’s what it is. Nero will see if she can get ivg somehow to give it a shot if helps will Dx. Now the fun part no insurance can’t work good days and bad days. Any thoughts or similar experiences? I am staying positive hope she can score a vile of liquid gold for me. Of that helps she will Dx. Yep she said she has Cidp patients and it can be a tough Dx sometimes. She feels strongly enough about it to try to get ivg for one round to see results. Have all the symptoms just Csf protein came in at 45. So financially exhausted physically exhausted any thoughts?
My CsF was normal. CsF is only one tool in diagnosing CIDP so I’m surprised she is relying so heavily upon it. Usually it is based on many tests. EMG, MRI, and patient symptoms. I have insurance so not sure on that end. You could try contacting IVIG manufacturers. Some have programs to help with getting medicine. Good Luck.
Thank you Masrub hopefully she will be able to get ivig for me I know its gold. If that helps she will Dx me. So many different variants of Cidp. Probably ok not to be DXed before getting insurance.
My CSF came back normal (if that is referring to the spinal tap) however I am diagnosed CIDP I have all of your symptoms and I am as confident in myself that this is what I have! Am on ivig and have been for 2 yrs. My advice is to get some more opinions from other neuros. Good luck
Chris
Australia