Welcome from one Floridian to another

March 27, 2011 at 3:20 am

Hi Wendy,
Sorry to hear about your dx:( If you are experiencing that little pain, be grateful…… If it gets worse, be worried!!!!! I would not rest solely on your neuro’s Dx of your back problems being the cause of your pain. You are describing neuropathic pain. Tingling,zapping, stabbing pain, pin pricks, numbness, all of these sensations exist thanks to our sensory nerves.
Here are things to start paying attention to:
Is your pain always in the same area
Is it the same type of pain (burning, pin pricks, etc)
How long does it last
Is it followed with loss of strength, (motor neuropathy)
Are you experiencing any loss of strength *pay attention to your feet for foot drop and you hands with your grip*
I have heard that when the nerves start recovering, they get hypersensitive which would explain the increased pain. BUT, you are new to the disease and dx. You are going to notice some changes in your body. Maybe a zap down the arm when you turn your head. CIDP is a tricky little bastard and I don’t want you thinking your nerves are in recovery, when they could be demylinating. Stay on top of your nerve conduction studies. Get them every 6 months since you just started your treatments. If there is no signs of slowed velocity in your NCV’s in 6 months, then congratulations!!! You caught it on time and could very well reverse some of the damage caused. If there is slowing, start asking your doctor for other options because the IVIG is not working. Right now, all you can do is listen to your body, document every feeling on good days and bad, I personally have a journal that I write in everyday and take it with me to all my appointments. Just because my doctor sees me on a good day, I don’t want to forget about telling him about the 3 days I couldn’t walk due to the raw sensation on my feet. It is very important that you document everything from fatigue to headaches, from aches to physical challenges you accomplished.
The next 6-12 months are going to be a test for you, your disease and your treatment options.