Heading (Hopefully) to Remission

Wow, I am surprised at the interest this has generated, so let me tell you how I got to where I am now.

I was stricken with significant CIDP symptoms in 2009. For a number of years previously I had noticed numbness, tingling, and pain in my legs and feet which was intermittent, and which I attributed to lumbar issues. I also noticed my hands were becoming increasingly clumsier, as I was dropping things more and more. In May of 2009 my left foot when numb. Then, I awoke one night with what felt like electric shocks coursing down my arms and legs. It was weird, but it went away pretty quickly, so I didn’t give it much thought. Within a few days later I was at work, when I noticed that my legs were extremely numb and painful. I went to the ER and was worked up for a stroke. I was told I had bulging disks in my neck. I went to a neurosurgeon who referred me to physical therapy. The left foot numbness went away after a week or so.

I did pretty well for a number of months, and everything seemed to blow over. Then in November of 2009 I started to not feel well. I could tell something was wrong, but just attributed it to stress. My low back really began to act up, and my left foot went numb again. In December of 2009 my right foot went numb. I was scheduled to see a physiatrist for my back, and he decided to do an EMG, as he thought my foot numbness was as a result of a lumbar problem On December 31, 2009 I underwent the EMG, and the physiatrist was shocked to discover significant damage to my peripheral nerves. He advised me to see my family doctor as soon as possible.

Through January of 2010 I was worked up thoroughly by my family doctor, who admitted after all the testing that he did not have a clue as to what my condition was, and advised me to see a neurologist as soon as possible. By this time I was really suffering horrible pain in my lower legs and feet. I was lucky enough to get an appointment with Dr. Norman Latov, director of the Peripheral Neuropathy Clinic at Weill Cornell Medical College in Manhattan. I saw Dr. Latov in February of 2010. He ordered extensive blood testing (including genetic testing) and I underwent another EMG at the clinic. He immediately diagnosed me with a demyelinating polyneuropathy, but we had to wait until the genetic test results were completed in April of 2010 for him to be certain it was CIDP.

Dr. Latov recommended IVIG, and in April of 2010 I was started on 40mg every two weeks, with a four day loading dose to begin. As time went by, the dosage was bumped up to 60g and then 80g every two weeks due to my weight (260 lbs), and my ongoing symptoms. The IVIG helped immediately with my pain and other symptoms, but I did have flares, especially at the beginning. Once we went up to 80g every two weeks, my symptoms were pretty well controlled.

Over time, I began to show improvement in both my function, and my EMG test results. Dr. Latov told me that we would continue the IVIG therapy until I plateaued, at which point he would stop the IVIG entirely to see if the improvement could be maintained. That point was reached in January of this year. My last infusion was January 9th.

I am not cured, and will never be healed. CIDP damaged my nerves permanently. I have no sensation in my right foot at all. I have little in the left. I suffer with ongoing, intermittent pain, numbness, and tingling in my legs and feet. My hands are still clumsy. I still take 450mg of Lyrica daily for my pain. My EMG/NCV testing yesterday shows that I have severe demyelinization in my legs and feet, and mild in my arms. But, my strength is intact. My motor nerves are intact. My neuropathy is stable. And I am off IVIG. I will not be able to return to who I was before CIDP. But I am able to walk, I am able to work, I am able to exercise, and I am able to do almost anything I want. And I figure that’s as good as it gets with this disease. I know this is a long post (the longest I’ve ever written by far), and I hope it is helpful and gives some hope. God bless all of you who suffer with CIDP.

Thanks for all the well wishes. When I was first diagnosed with CIDP, it sometimes felt like this forum was all I had to comfort and sustain me. Yes, I could talk to family members, but no one understood what I was going through like the people here. Shellbones, I never was on any immunosuppressants. IVIG and Lyrica were my mainstays.

limekat:
I have heard so many stories about people with CIDP who were mis-diagnosed with spinal problems and ended up having back and neck surgeries. I can see how that could happen because of nerve pain in legs and arms from CIDP. I sometimes am concerned because I suffer with arm and buttock/leg pain, and I’m not sure if it’s from the CIDP or my spine. I also suffer with neck and back pain which can be severe at times. Did you have back pain from your CIDP?

The thing is, if you take an MRI of pretty much anyone over the age of 30 — and certainly anyone over the age of 40 — you will find bulging, degenerative disks, bone spurs, and spinal stenosis (narrowing of the spinal canal). When physicians see these MRI findings, and have that patient complaining of pain and numbness, tingling, etc., the doctor attributes the symptoms to the structural changes shown on the MRI. A surgeon will want to fix the problem by operating.

However, studies have shown that many people with significant findings on MRI have no symptoms, while many people with rather insignificant findings on MRI have significant complaints.

If the neurological complaints are from CIDP as opposed to any structural changes shown on MRI, surgery will be absolutely useless. Back pain is a common complaint of those with CIDP.

limekat:
You are absolutely right. I have battled back pain off and on for most of my life, and over the past few years have developed neck pain as well — coincidentally right around the time my CIDP developed. For the last week I have been battling some pretty heavy duty sciatica. It’s no fun, but I agree with one of my law partners, who didn’t have back surgery until he had to be carried to the hospital. CIDP can cause a lot of weird symptoms.