My CIDP Diagnosis Story

I have always been a very active person. I rock climb at a nearby gym 3x a week and my passion was to go out hiking and Geocaching/Terracaching with my two daughters.

In January my left knee started to feel weak when I was rock climbing at the gym. I also noticed that my left arm was feeling a little weak when working on a new climb that was testing my limits. My knee finally started giving out on me enough to go to the doctors. They took an x-ray and found nothing wrong with it.

The next Sunday after I had my x-ray done I woke up and the whole left side of my face was numb. I was a little concerned and called my doc to get an appt. They thought I was having or had a stroke and sent me immediately to the ER to get a CT scan. The CT came back normal and I was sent home.

Over the course of the next few weeks my left pinky and ring finger started to feel numb and tingling. I ended up going to the ER again only to sit on a bed in the hall for 6 hours while they called the neuro on call to give me an examination. They only found a little weakness in my left hand/arm and sent me home.

The next week I started to feel the tingling in my left leg an foot. At first it felt like a cool sensation that slowly started to burn. So back to the ER again only to have them do another neuro exam and then give me some gabapentin to ease the nerve pain. I was also finally given a referral to a neuro but I had to wait about a month to get in to see him. I pretty much made up my mind that I would not go back to the ER even if my symptoms got worse.

When I finally got in to see my neuro he upped my dose of gabapentin to 2300mgs a day which really helped with some of the pain and strange sensations. I experimented with trying to stop taking it but I usually only lasted a day without it. I was tested for every type of disease possible on my first visit and given a referral to get an EMG. The EMG showed a slowing of my ulnar nerve but more interestingly it showed chronic neurogenic changes in most of the nerves in my leg. This got me thinking about a past episode of left sided weakness I had about 10 years ago that “went away” by itself after about 6 months. So most of my family and neuro thought I had MS. A few rounds of MRIs later and there were no visible lesions on my spine or brain.

The next appt I had my neuro said he did not know what I had and he was going to take the “shotgun approach” towards diagnosis. He sent me for another round of MRIs and had more blood work done. All of which came back normal. I sure didn’t feel normal and the weird sensations and pain was climbing up my left leg and going past my knee. I was also given a QST test which showed I had something really wrong with my sensory nerves. I also started to get frequent small muscle twitches.

I started to lose my calf muscle on my left leg and began to limp/hobble around every where and started having real trouble walking up stairs. All of this happening to a person who usually thought nothing of a 15 mile day hike. The weird sensations, pain, stiffness and fatigue was really starting to get to me and I wanted to get some answers fast. After my last neuro visit I lost some confidence in him and started to make some waves at the hospital by getting my PCP to refer me to the top nueros at the hospital. I got shut down by all of the neuros but I was able to get them to look at my records and that must prompted some discussion about what I had. My symptoms were not textbook CIDP since they were primarily in my left peripheral nerves. My NCS also only showed slowing and not a conduction block. Soon the tingling started in my right leg and started spreading from my toes to my calf.

Finally last Friday my neuro diagnosed me with CIDP/MADSAM. I will start IVIG treatment on the 21st of this month. After reading many stories on this message board I feel fortunate to only have had the symptoms since January. However, I do feel all of your pain and wish you all the best on your paths towards recovery.