CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I also have CIDP and went thru 8 mos of IVIG with no relief at all.
Also stopped Gabapentin 2400 mg for over a year, with no relief from that either.
Will be starting Rituxan infusions with a new neurologist shortly.
Hope that helps me

What are your symptoms? I look forward to your experience with Rituxan.

I’ve been on Gabapebtin preceding the CIDP and IVIG and periodic steroids for the CIDP a couple of years and now SCIG Hizentra for like a year and a half with weekly at home self infusions. I’m 74 and have a pretty active full life as an editorial photographer. The infusions definitely have worked. There were some bureocratic problems in the switch over from the IVIG to the SCIG and I went 6 weeks without any. I was bed ridden without them so I know their value.

Both feet are totally numb, also numb both legs to thighs.
Balance is totally not there so I need a cane or walker to get around.
Right hand is now totally numb, can’t hold anything with even little weight.
My lips are numb and some numbness in my face also.
Just had EMG of right hand and going end of month for results with orthopedic doc.
Not sure if related to neuropathy or a pinched nerve somewhere.
I also have numbness in my pelvic area.
Been gradually progressing over 12 yrs when started in my toes of left foot.
Been told I’m unique and seen half dozen neurologists who are baffled with my various symptoms
Broke my ankle 3 times in a year and had no pain even with bone protruding or even after surgeries with pins and plates.

This new neurologist feels if I’ve tried plan A and B and it didn’t help, we need to go with Rituxan infusions.
I’m scheduled beg of March for them.

Hi there, I'm Mark. I've been experiencing polyneuropathy since a head injury 9 years ago. It finally got real bad in April last year, along with muscle cramps all over, arthritis in my hands and feet and tendonitis everywhere in my arms hands, and feet. I'm in constant pain from the bones on out, my muscles are constantly twitching or cramping, and I'm numb to above my knees and up to my elbows. Electroconductive tests in October showed demyelination and axonal polyneuropathy. I'm desperate for an appointment at Mayo, where I am a cardiac, pulmonary, and hepatic patient, but Neurology doesn't have space. Banner, where I'm also a cardiac patient, doesn't have any appointments either. And there is nobody in New Mexico, where I live, who I can see either. I'm hosed, frustrated, and want to just lay down and die. Sorry, but that's how I feel today. Hopefully, tomorrow will be better.

Hello @markduran, Welcome to Connect. You certainly have a lot going on which must make it extremely difficult to deal with. I'm sorry to hear that you haven't been able to get an appointment with Neurology. I'm not sure if it might be an option for you but Mayo Clinic also collaborates with hospitals that are in the Mayo Clinic Care Network and I see that CHRISTUS St. Vincent is a Care Network member - https://www.christushealth.org/locations/st-vincent?,
Here's a complete list of the member hospitals - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

Have you looked into a pain rehabilitation center?

I've got neuropathy in both feet and have been on IVIG for a year after the CIDP diagnosis. I would say I've had minor gains in the neuropathy. At least it is no worse. On the other hand, muscle pain and weakness are pretty bad, mostly in my hands. It is hard to tell if I'm seeing many gains there but my neurologist measures my grip strength every 3 months.

Hang in there Mark! I totally get the last part about giving up. Talk to someone if the depression gets too bad. I'm thinking about that myself...good days and bad, but there are a lot of people out there much worse off.