May 18, 2015 at 9:53 am
The paralyzation from CIDP can most certainly affect speech. The vocal chords can also be paralyzed, along with the respiratory system.
I don’t want to be the bearer of bad news, but this is a very critical time foe the neurologist to find something to help.
As I advised above, when the standard treatments are not effective, it is time to look at chemo. Rituxan would be first. That targets the B cells. If those are the “sick” cells, the Rituxan eliminates that part of the cell.
If that does not work, them you need to look at targeting the T cells, and that chemo drug starts with a C… I forgot off the top of my head how to spell it, so I am not going to try.
Eventual respiratory failure is responsible for many of the CIDP patients our neurologist has treated (over the past 25 years).
Now is the time to fight for her life; you don’t have much time.May 12, 2015 at 12:48 pm
My partner was completely bed ridden and paralyzed up to the neck, including vocal chords. On a trach vent, lungs also were paralyzed partially and she went into respiratory arrest one night. After 50 minutes of CPR and 3 resuscitations, they brought her back. At that point I asked the neurologist for anything else, because she failed IVIG, PE and steroids.
She got the Rituxan, and because of her conditions, he was careful and adminisetred 375mg once a week for four weeks. She started to show some movement within a day of receiving the Rituxan, however one does not benefit fully from the infusion for 4 – 6 weeks.
She is not on a 6 months maintenance schedule and is walking, cooking, cleaning … and alive.May 8, 2015 at 2:48 pm
angelast …. how do you develop GBS if you already have CIDP? I am confused. If you have been told that only “GBS” patients have respiratory failure, that is incorrect. You’ve only had CIDP, and something triggered a severe flare up.May 8, 2015 at 2:46 pm
Go to Good Samaritan Hospital and see Shalini Mahajan, MD. Board Certified in Neurology and Neuromuscular Medicine.
Just saw her a couple weeks ago. GREAT lady.
CIDP CAN come on fast. The GBS term really screws up understanding this PNS AI disease.
My partner has severe sensory damage, too. I feel for you both. :/May 8, 2015 at 2:38 pm
my partner was the same way, and ended up coding and being placed on a ventilator. Didn’t respond to ivig or Plasma Exchange.
The neurologist tried Rituxan, 375mg once a week * 4 weeks. Today, is moving, walking, talking… alive.
It is worth a try.