My Life with CIDP

My Story...

May 2010 – Gastric Bypass Surgery

September 2010 – Became pregnant with our first child

December 2010 – After a very complicated pregnancy, we lost our son, Austin, due
to a rare genetic blood clotting disease that we did not know I had until it was too late.

January 2011 – I started developing tingling, numbness and soreness in my feet.

Over the next few months, these symptoms moved up both of my legs. My feet are usually always cold to the touch. I began having hot sensations through my legs; it felt as if someone was taking a blow torch to my legs. This feeling would last from 10 seconds to an hour or so.

I began started to have difficulties walking. I was having more bad days than good days. Stairs were not and still are not even an option. I am unable to lift my foot as high as a small step without having to lift my leg for assistance. I began to feel as if I was walking in space, every time I would try to take a step, my legs would look as if they were having a seizure. They would shake uncontrollably, fighting me to put my feet down.

July 2011 is when I decided enough was enough, I waited too long and I needed medical care. I went to my doctor who immediately suspected polyneuropathy. He did a blood panel and everything came back normal.

At the next appointment, just one week later, I had gotten even worse. Movement was almost impossible, the numbness doesn't go away.


August 7, 2011 – My PCP sent me for an MRI of my lower back, looking for any kind of nerve compression. Results came back normal.

August 8, 2011 – I was at home alone while my husband was working. Unfortunately, we don't have any family around us, we moved from IL at the beginning of 2011 for a better job for my husband. Our family is in Oklahoma and Illinois. We are in Colorado. Sorry to get off topic .. I was in my chair about to make some lunch and when I went to get up, my legs did not move. I realized then, I had no feeling. I called my mother trying not to panic and she told me to call my doctor. He told me it was time to go the emergency room, so my husband rushed home and got me to the hospital.

The ER doctor did a CT SCAN of my brain to check for any tumors, stress, or nerve compression. Results were normal. They decided to admit me.

I stayed in the hospital from August 8 – 17, I spent 5 of these days in Neuro ICU. During my hospital stay, I saw Dr. Cohen, my neurologist, every single day.
Day 3 of my hospital stay, they started me on IVIG treatments to see if I would
make any progress while they figured out a diagnosis.

I had a MRI OF LOWER BACK – Results were normal.
Several blood work panels – Results were normal.

Each day Dr. Cohen did a reflex test. Some days I would pass, some days I would not.

I showed poor results when he did the EMG.

Diagnosis: Chronic Inflammatory Demyelinating Polyneuropathy. I had 4 IVIG treatments during this hospital stay, did fairly well working with physical and occupational therapy. August 17th, I was able to go home with the assistance of a walker and wheelchair. I continued to make progress, able to walk a little more and a little bit further each day.

August 22 – Just 5 days after being released from the hospital, I was in the kitchen making my plate for dinner and my legs got a quick hot, burning sensation run through them, they went numb and I lost all feeling and all movement. Fortunately, my husband was home to get the chair underneath me.

At my follow up with my PCP, he wanted to readmit me for another treatment, sent me to the hospital to be admitted. Unfortunately, my neurologist, Dr. Cohen was on Jury Duty so they weren't able to contact him and the neurologist working the hospital that day said he thought it might be soon for IVIG and sent me back home, telling me we were going to take the risk that I would not get any worse before I saw Dr. Cohen on August 26th (just two days later). Ten minutes into my appointment with Dr. Cohen, he told me to sit tight. He came back a few minutes later saying the hospital had a bed waiting for me, he was going to re-admit me.

September - I went back to the hospital. He ordered a "CIDP complete workup" which was just a ton of blood work. Results came back normal except that IGG level was more than double what the normal level is. Before receiving an IVIG, the nurse wanted to make sure he knew it was high, just as a precaution. He came in to inform me that the higher it was, the better, and the longer the chance of the treatment lasting. I will have 3 treatments while I'm here, one more today, and one more tomorrow, with the possibility of going home tomorrow. I have already started to make progress again. I was able to walk (with assistance) to the shower and back to bed and not have as much pain as I've had before.

October – Admitted again for another IVIG treatment.

December 15th - FINALLY!!!! The Denver trip. My neuro referred me to University of Colorado Hospital. My neuro’s intentions were to have a stronger treatment than what he can give me here. I was told to expect another EMG and a spinal tap. At my appointment, which was only a one hour consultation, we were told that he would do the EMG and the spinal tap IF I wanted further tests done to confirm my diagnosis for CIDP. Well, I think having the most severe of the symptoms is enough confirmation for us.

Now, my insurance has finally dropped us, saying that I was not compliant to their rules. Which is so not true – why would I be non compliant when I need all of the help I can get? They’ve dropped us so I’m done dealing with it. Now that I don’t have insurance – I don’t have a clue what to do because I have to have these medications.

I am currently on 400mg of Neurontin, 20mg of Prednisone (was on 80 previously), Percocet, Fentalyn, and several vitamins that I take from my gastric bypass surgery.

Hi Mrs. M,

I, too, began experiencing symptoms after I miscarried/or was pregnant. I felt my legs were stuck in cement feeling. I think it is so helpful to have a diary of sorts. I stopped writing a diary after I began going to the chiro. But, thank you for reminding me how helpful it is to write, to help reflect, evaluate and even simply to vent.

I am sorry for your issues with insurance, but is it possible you can qualify for stem cell study going on right now with North Western U?

Just a thought.

Hugs,

Christine