My story

Well. It was a rough year.

I had a seizure in August 2014. I've had many before. I'm a Type 1 diabetic, and when my blood sugar is catastrophically low that's what happens. Two days later, I fell and broke my foot. I did okay with that, walked around with the plastic Stormtrooper-looking cast, hauled it up and down stairs, etc.

I will add that fortunately for me I am a college professor. The story of the past year could have been much more difficult if I had a job that required a great deal of physical labor and/or prevented me from being flexible in my hours. I've had those jobs before. It wouldn't have worked.

When the cast came off my broken foot I found that my gait did not return to normal. I broke the right foot, but the left foot felt as though it was flopping at every step. The orthopedic surgeon shrugged. Not his problem, not his foot. I kept going about my business, but I was tired. I felt more and more as if I were trying to walk through wet concrete. I had unbearable bouts of itchiness down my spine. I began to feel dizzy in the shower, and stiff in the calves. I spilled something in my office, and was barely able to kneel down to retrieve it, and unable to stand back up once I had knelt down.

And then, in March, I had three nights of agonizing pain in my legs. I paced and paced, as that was the only thing that brought even moderate relief. On the third night I made my way downstairs and couldn't get back up. I fell about five times that weekend. I finally made it back up the stairs. I went to my endocrinologist, but getting in to see a neurologist took forever. The first one was very disappointing. He sent me off with a diagnosis of "ataxia," and ordered an MRI of my brain. Between the initial appointment and the review of the MRI I fell again, and this time, even though I fell in my carpeted hallway, I broke my wrist and my left foot. I went back to see him again and he was unsympathetic. He told me quite condescendingly that I did not have MS, and looking at my casts/splints, suggested that perhaps I should "get a helmet."

Thus began a summer of excruciating pain. I had surgery on my wrist. Somehow in my fall I had also popped a couple of ribs out of place. And fatigue. I remember taking 15 minutes one day to write a two line response to an email. I would teach my summer school class and come home to crawl back into bed, and my bed was now in the living room, because since breaking my wrist I could no longer get to the second floor of my beloved old house. I'm a Type 1, so I've almost died a couple of times. I knew I wasn't dying, somehow I knew that what was wrong with me wouldn't kill me, but sometimes I wished for it. I've never been so miserable. My GP and Endo tried to help -- they gave me the drugs that deadened some of the pain, but just damn.

During this time, as I searched for a diagnosis, it was the physical therapists who helped me most. The woman who worked my ribs back into place, and the woman who helped me walk, showed me how to use a cane, and finally recommended the orthotic braces. As the fall semester began, I was much more mobile, even if I still didn't have any idea why I had disintegrated. I know on that first day of class, as I struggled in with my braces and cane, my students were thinking, "what is this mess?" Teaching was extra difficult. Not only was I taking massive quantities of drugs, I could barely stand the sound of my own voice. Not good when your job is to "profess."

Finally I found a Nurse Practitioner who showed and explained to me my spinal MRIs, which held no clues to my misery. She listened, and then she said she knew the neurologist for me. I actually had an appointment for that afternoon with a different neurologist. I canceled it and waited two more weeks to see the doctor she recommended.

It was good that I did. The new neurologist was professional and compassionate. I had no reflexes in my legs. I was weak in all four limbs. He immediately added Cymbalta to my drugs. He did the EMG/NCS himself. As he measured my right arm he looked at me and said, "you must be very frustrated." I saw beyond him that my husband's eyes were filled with tears. He told me later that all he could think of was me, trying to open a jar, and handing it to him saying, "I've got nothing." It was true. I had never thought to say the word "weakness." I guess that's just me. I've slogged through a struggle or two, and one word I never allowed myself to use was "weak." But my nerves were only conducting at 30%. This explained a lot. He asked me if I'd heard of CIDP. All the results were consistent with it so far.

My new favorite neurologist then scheduled a lumbar puncture for that same week. The protein was elevated (200). He phoned me himself, and told me that CIDP was confirmed, and I should be happy, because there was a treatment that would have a "Lazarus effect." Honestly, I was still too weak to react with the proper excitement. It wasn't a feeling I was familiar with anymore.

I began IVIG treatment in October. I have had the loading dose plus two maintenance infusions so far. There have been ridiculous delays per the insurance company sending me from one pharmacy to another, but I think I have both a pharmacy and a nurse now and I'm set for one (two day) infusion per month. The results have truly been amazing. I have had moments when I have felt like myself again, in energy and mobility. The cane and braces have been discarded. I have gone from not being able to dress myself (or even feed myself for a while) to being independent again. I still don't have all my strength and certainly not all of my stamina back, but I am filled with gratitude for the wonders of science, and for good, caring doctors. And of course to the plasma donors who make the IVIG possible.

My journey continues. Thanks for allowing me to share my story.

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Hello Jeanette,

All my best wishes for you to recover as much as you can. Just one advice if you let me. Keep working on your threatments all the time and don't let doctors to delay you in any case. The most important in this disease to notice it in time and don't let your axons loose by waiting weeks for someone.

I wish you a much better new year than the previous one. !

-Istvan

Thank you so much!

I had a delay of seven weeks between my loading and first maintenance dose so I know what you say is true!