“Have been noticing lately that my hands will cramp and then my fingers will contract and freeze up in the most odd positions and then today one of my toes did the same thing. I have also been having more muscle cramps mostly in my calves…..have also been seeing and feeling more muscle twitching and of course the little electrical storms that have been going on since this journey started have gotten a little worse lately as well.”
I could have written this. I have all of the above.:eek:
OK, I have been lurking for a couple of months because my diagnosis is not firm. My neuro is still calling it idiopathic neuropathy because I do not want to do the nerve biopsy. I had my first 2 day pulse steriod infusions last week. He has discussed IVIG with me. My LP does not show any abnormal proteins and I have had all the hereditary disease and heavy metal bloodwork with no abnormalities. Everything I read on this site describes me. Now the hands thing. It started with the middle finger on my left (dominate) hand doing a trigger finger lockup. That finger will not straighten completely, but does not lock anymore. Now it is trigger finger in the right ring finger. If I bend it, I have to use the other hand to straighten the finger back. In the past 6 months I had DeQuivaines (sp) in my right wrist that had to be injected with cortisone. I drop everything I pick up, have extreme difficulty with buttons, etc.
Someone was discussing numbness of the tongue and I was shocked because I also have that. My feet and legs and now my butt are numb and I have a lot of pain in my legs. I take Lyrica 350 mg a day for the nerve pain. My neuropathy has gotten a lot worse in the past 6 months.
More history later if you like, but I just had to comment on the hands problem. I had not associated it with the neuropathy/CIDP.
Nice to meet you all!
Thanks for replying. Yes I was dx with CIDP in nov 07. I have had numerous
emg tests, every blood test out there and a spinal tap. The emg showed nerve damage, the blood test showed nothing, the spinal test showed elevated protein levelsalso my reflexes were not present. I have numbness in the toes,bottom of the feet up the front inside of the legs to the knees and now it is starting in the fingers. I still have feeling on the back of the legs and some on the top of my feet and toes. Very little motor control in my toes. I find that I feel weaker and number in the evenings than in the morning and day time. Can walk up stairs with something on my feet but it is difficult without. Will not even try to run up or even run, afraid that I will run out of steam. My feet can be very painful at times as if I were walking on eggshells.
Had 2 rounds of ivig treatment hoping for more. They really seemed to help.
Does this sound right for a dx for cidp or could there be something that they are missing.
Welcome to your new family, where we feel what you feel. I am another New Yorker, I’m in the central part of Long Island. Being in New York, New York, you should be able to see excellent doctors. IVIG’s will not bring about a cure, you may know that, many times they do make you feel better and stronger, but another purpose is to just CONTROL progression of CIDP. You said you had the flu, did you get a flu shot??? Some of us believe the flu shot plays a part in triggering CIDP and some like me, will never get a flu shot again.
I was just wondering if you might have had the brand of IVIG changed, some of us found we do not react well to a change and need to know the brand of IVIG we do well on.
This is just FYI, sometimes our site will go down, it’s a good idea for a new member to “buddy-up” with a senior member and just exchange emails to keep on file.
Welcome to your new family. We understand because we feel what you feel. You can ramble and tell us your story and you can ask questions too. We are also here to listen when you are angry, need to vent, and we’ll reach out with a hug if you want to cry.