A painful journey to diagnosis-CIDP

It all began in September of 2012. I lost sensation in my right big toe. I'm not sure why I didn't take it more seriously, especially when I started losing sensations in my small toes on the same foot. Then went my left big toe and eventually my remaining left toes. THAT'S when I realized that I should contact my primary care physician. He tapped my reflexes and with a concerned look in his face, said simply- "I'm concerned about your condition, I am going to refer you to a neurologist". The next two months would be painful. I had nerve conduction tests, an EMG, an autonomic panel, a spinal tap, 26 vials of blood drawn, a glucose tolerance test, and a biopsy. Not to mention an office visit to test my reflexes, balance, and nerves. I missed an entire month of work and had to beg my husband to pay my bills while I was out of commission. After receving word that my spinal tap was abnormal and my diagnosis was CIDP, my course of treatment was three days of IV solu-medrol, B-12 shots, and a prescription for 300mg of Neurontin. It worked. I was symptom free for three months.

Now, after 3 months of bliss, my symptoms have returned. This time it was not gradual. I was sitting at my desk working on my computer when all of a sudden- BAM. My hands were immediately affected and I was unable to type. My feet were burning and tingling at the same time. I had to go home.

Here I am again, getting ready to go for IV solu-medrol. Not looking forward to sitting there reading a book for hours at a time. The only positives- good insurance and really nice nurses.

To be continued.....

Please keep posting. My condition and symptoms are so like yours. I'm currently on 70 grams of immune globulin IVIG every 3 weeks. Friday will be the first time that I'll be on 70 grams. It was necessary to raise it. Neurontin just zaps my energy. I would love to know what your Doc is subscribing for you. Good luck !!

Hi Maddy, I'm curious about the IVIG. If my IV solu-medrol treatments no longer work, the IVIG will be my next course.

Message me if you could, I would like to know more.

Hi, The IVIG's help me tremendously. Every once and a while it seems to stop working. I started out on 40 grams every 3 weeks, went to 60 grams and currently 70grams. I had my infusion yesterday and a lot of my symptoms have dissipated. Some say it's the only thing that works and others say it does not. I think you have to play around with your Dr. regarding frequency and dosage. Don't expect miracles with the IVIG, it takes time. But, for me I couldn't live without them. Why don't you send me a friend request Madeline Wolner. Please keep me informed about your IVIGs. We can learn from each other. Have a great weekend