Has anyone else experienced numbness and tingling after an infusion? I have been having IVIG infusions for 4 years now, every 3 weeks. The past two times, my left foot and calf have experienced total numbness which is very strange. My last infusion was yesterday and the strong numbness started almost immediately. CIDP is such a strange thing to have.
numbness was one of the symptoms i had when first diagnosed with CIDP june 2013. i am left handed & my hand/arms became weaker & weaker over a period of 5-6 days. i went to the ER on a thursday after work. i could barely move my right arm & by the next day couldnt move or feel my right arm even a fraction of an inch. i only had maybe 60% use of my left arm. it took a few days to diagnose the cidp & they started me on the 5 day "loading dose". since then i've had a couple of relapses. i am now in a wheelchair. the numbness comes back when i relapse or when i'm tired/exhausted. it affects firstly my feet- toes or underfoot. the more exhausted i am then the further it goes. then it will affected my legs from knees to ankles & feet. at the same time it will affect my hands & forearms. my hands go rubbery & holding things or picking up things becomes very difficult. the tingling has mostly gone away every time i've been put on prednisone. but i was also diagnosed with carpal tunnel syndrome in 2009. i am now on a maintenance dose of 10mg/day & some of the tingling is coming back to my hands. i have also started with muscle cramping during the night on my calves & underfoot. will have to talk to my neuro about that at my next appointment. the calves are especially painful. for the "zingers" - they got worse in the days approaching ivig day & since last fall i've been talking gabapentin for that. it's been a life-saver. i am also itchy but mostly just my back. however i now have really bad brain fog with the gabapentin. i find the symptoms worsen in the 3-4 days leading up to ivig day. the day of & 2-3 days after, all i want to do is sleep. i am too tired to do anything but sleep. don't know if this helps but just know that you are not alone in this. we all experience different symptoms & all to different degrees. cidp is quite the b*tch.
I have had the residual numbness, tingling, & burning in both feet for at least 10 years. What is happening now is much stronger though and it is only on the left side which is strange. I can't even feel anything in my left foot and calf and keep having zingers. I'll give it a few days and see if it settles down, and if not, I will call my dr. It is just strange that this has happened after the last two infusions and has never happened before.
mdolich said:
I have residual numbness/tingling 24-7 in my feet, lower legs, and hands ever since I first came down with GBS (Guillain Barre) back in 2003. I was re-diagnosed CIDP (which is considered the chronic form/cousin of GBS) in Jan 2006 after a bad relapse in Nov 2005. I would definitely talk to your neuro about it, but most people who have either GBS or CIDP usually have residual numbness/tingling, burning sensations, etc... They may want to think about switching brands of immunoglobulin. I have been on IVIG every three weeks ever since being re-diagnosed CIDP in 2006. My neurologist put me on Cellcept to try and space my infusions out further. It was working up until last week when I started to have some side effects. She backed down my Cellcept dosage till I see her next month.
I will put this out to the rest of the members for more feedback.
Good Luck, "Stay Strong and keep a Positive Attitude"
Check with noir neurologist . Mine has me every two weeks but it’s in my system for three . I had to come off of it to get accurate test. I knew I would be unable to do any thing while I was infusing so I pushed harder the couple of days befor . This caused my exhaustion to really hit. I started back up a week latter and quit pushing the few days before and I still fatigued but not as much. As for the numbness it has never gone away gralise gabepentin even hydroocondone Allen have helped allot to mask the symptoms … They vary from day to day and when the fog hits me I cut the dose in half and stay buys to keep my mind focussed elsewhere . I big doesn’t stop my numbness or craps it has. Just reduced it a slowed the progression to a crawl.
Robert CIDP fighter
mdolich said:
I have residual numbness/tingling 24-7 in my feet, lower legs, and hands ever since I first came down with GBS (Guillain Barre) back in 2003. I was re-diagnosed CIDP (which is considered the chronic form/cousin of GBS) in Jan 2006 after a bad relapse in Nov 2005. I would definitely talk to your neuro about it, but most people who have either GBS or CIDP usually have residual numbness/tingling, burning sensations, etc... They may want to think about switching brands of immunoglobulin. I have been on IVIG every three weeks ever since being re-diagnosed CIDP in 2006. My neurologist put me on Cellcept to try and space my infusions out further. It was working up until last week when I started to have some side effects. She backed down my Cellcept dosage till I see her next month.
I will put this out to the rest of the members for more feedback.
Good Luck, "Stay Strong and keep a Positive Attitude"
MD,
What were your side effects from Cellcept?
I was diagnosed in 3/15 the IVIG has really helped every 4 weeks. Numbness almost gone. Still very weak. Thanks for suggestion about tonic water for cramps in legs and hands it makes a big difference Still trying to work out how muchI need to take per day?
It has Ben a roller coaster ride. When I get one thing under control something else pops up. Anyone else have CIDP RA AND Parkinson’s ?
My hands have become numb after my last 2 infusion especially my pinkey fingers. My legs and feet tingle like crazy for 2 or 3 days after I have my infusions.
I have it in my hands. Neuro told me to try wearing the carpel tunnel braces but they are not working.