Newly DX Chronic Inflammatory Demyelinating Polyneuropathy
I apologize if my story is too long. I will make a very long story as short as I can.
December 2010 - I went into labor at 17 weeks due to an unknown blood clotting issue. I was able to deliver our son naturally but hours later I had to undergo a DNC for the placenta I was not able to deliver.
January 2011 - I feel like I have been on my feet all day. They are tired and sore as if I've run a marathon and at night they feel numb and tingly.
This experience continued for several months, slowly moving up my legs. The tingling became more severe, the numbness came and lasted longer. I was unable to walk properly, my legs couldn't quite touch the ground without having a muscle spasms, prohibiting me to walk. The pain in my legs became excoriating.
During these few months after, I had bad days and I had good days. When my good days were good, they were GOOD! My husband and I would ride our bikes on average 10 miles a day on his days off.
May 2011 - The good days are as rare as a blue moon. We aren't able to bike ride anymore. I have collapsed several times as my legs have given out. Over the next few months, I quickly get worse. Almost every night, my husband is having to carry me to bed.
August 2011 - Time to quit playing around and procrastinating and call the the doctor. Immediately, blood tests were done - normal. The next week (Aug 8th) LOWER BACK MRI - to look for any nerve compression - tests were normal.
August 9th - Legs were completely numb and I had no feeling or any movement at all. I called the doctor and was told it's time to go to the hospital.
ER VISIT - BRAIN CT - checking for any nerve compression, stress, or tumors - NORMAL
Admitted to the hospital the same evening.
BRAIN MRI - results normal
SPINE MRI - results normal
ALL BLOODWORK - normal
I was sent to ICU for 5 days as I was getting worse day by day in the hospital. I was given 4 IVIGG treatments.
RIGHT AND LEFT LEG REFLEXES - None, no response for the reflex test until the 7th day in the hospital
EMG - very dull responses - almost none
I was diagnosed with having Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). I am currently on 60mg of Prednisone, Neuronton, and Oxycodone for pain.
I have been recovering quite well .... until yesterday. I have been working with PT and have been able to get around the house with my walker (also have a wheelchair). Last night, while making my plate for dinner, my legs gave out and went completely numb for the first time after the treatments.
My neurologist has said the treatment can work anywhere from a couple weeks to a couple months. Could it be possible my symptoms are coming back so quickly because the treatment is wearing off? I am so nervous about all of this. I was expecting to be able to get out of the hospital bed and go back to my life but that's not quite how it's happening. I fear being put back in the hospital because the symptoms have returned. I did call my neurologist and will see him Friday, I have an appt with my family doctor as a follow up tomorrow.