I am starting to "be jerkey"

Hi All,

My body has decided it wants to try dancing without my saying so!

When I am sitting watching tv or just relaxing my body has started these little jerkes/jumps now. If I am typing on the computer or doing somthing where I am not in relaxed mode, more rigid it is not jerking or I don't notice it. Maybe that is one of the things that keeps me from falling asleep or wakes me out of a sound sleep??? Is any one else experiencing this if so does this jerking get stronger or is this just one of CIDP's little annoying jokes and it sticks around for a while and just stays small and annoying??? One of the most embarrassing places it seems to happen more often than other places is at my crotch area and that really makes me jump after I get that jerk there. It could be worse I know and I am very greatful that it is not...

Thank you all for being here...

God Bless,


Pauline, the involuntary movements we call twitching and jerking are referred to as “fasciculations” (pronounced ‘fass-sick-you-lations’) and is one aspect of CIDP. ALS pts also have this symptom. I’m more aware of mine while I am sitting and they most often occur in my pelvic region too. With me they are no more worse than when they started, thankfully. IVIG every 4 weeks has kept me at the same degree of symptoms for the past 2 years and I feel blessed. I wish you the very very best.

Hi JMichaelS,

Thank you for your reply! I am so glad for you that your IVIG is keeping symptoms at bay. Unfortunatly I had several negative reactions my first trial on IVIG and my doc. took me off-and I am not a good canadate for any steroids. My reg. neuro sent me to see the professor and head of the of the neurologgy dept. at Wayne State University to see what he could come up with for me to take and he suggested a pill (I can not remember the name of it right now) and I read about it. It takes a few months for it to start working and giving relief of symptoms, but what I don't like about it is it can cause lukiema (I think that is the name of the cancer it can cause). I say NO THANK YOU to that one. And The Professor/

doctor was offered a great job in California so he had to leave a bunch of us behind with a quick suggestion for our reg. Neuro's and his phone #

Thank you and ...Gods Blessings,


My jerky moments happen while I am walking, or if I am too tired. I am so sorry you have not found a treatment that works for you. I am on IVIG every other week for 2 days. My doctor has also suggested prescriptions that I have turned down due to the numerous "possible" side effects.(they were for pain control) When I try to fight the involuntary leg movements I never win, so now I incorporate it into my uniqueness. Pelvic twitch? interesting haven't experienced that yet.While you are searching for the neurologist who fits your needs, have you thought about looking into holistic healing help for your symptoms? I wish you well.


Last year I went through about six weeks of major jerks and twitches in my mostly lower legs. It was never when I was standing, but either sitting or lying down. After I was switched back to my original IVIG brand and increased from four to three weeks with a larger IVIG dose did they stop. This week through at accupuncture the legs gave some major jerks again. I can feel them coming before my leg actually jerks out. My neurologist noticed them but sort of brushed it off........he said it wasn't connected to CIDP. So, you are not alone. Keep on moving forward and good luck.



Hi, I have these annoying jerks ALL THE TIME!!!! They can keep me from falling asleep at night, they happen in church, (I don't sit in the front anymore)...LOL I GET THEM WHEN I'M DOING MOST ANYTHING!!!! I asked my Neuro, he said they are CIDP related also. If I get them in my hands I can count on my hands to also tremor in just a few moments.When I get them d

uring the day I am just whooped for a while afterward. I take Cymbalta for pain, I'm stopping Gabapentin b/c it's making me feel so out of control of myself. The Cymbalta is helping with my pain though. I wish you all the best with this monster of a disease...~Blessings, Char


If the medication you are referring to is Cellcept or any other immunosuppressant, it does carry a very small risk of leukemia. Those medication may help keep CIDP under control longer with and without IVIG. The goal is to lessen the need for IVIg with these medications. You have to weigh the risk/benefit. I have been on most of them. They did not work for me but have heard from others good things about Cellcept. And better response with Rituxan. May be worth another look and asking your doc. Mary B


My PCM likes to call them "Micro-Twitches", although fass-sick-you-la-tions sounds SO much more scientific. I get them all the time, usually more in the last week prior to my next IVIG treatment. When I'm doing semi-repetitive actions, like playing Mahjong or Wii video games, my fingers will start doing their own thing, and it has gotten so bad some days that I just toss my stuff to the side and sit on my hands! I'm still active duty, so I get the Sugar Free Gamunex, straight, no chaser, and I've read some newer scientific research that recommends adding immunosuppressants to the IVIG to help.

Also to 2bt2: Your Neuro needs to read up on the more recent studies of CIDP. Like JMichaelS states above, it IS a recognized symptom of CIDP. If your Neuro is like mine and has NEVER, EVER seen another case of CIDP (his specialty is MS) you have to lead him to the information at times.

Best of Luck to All,

Big Daddy Qberry