Living with CIDP

In May of 2012, I noticed something was not right when I would run, I couldnt run on my tip toes that well, my feet felt weak. I chalked it up to me not running correctly and that I was just getting old, I mean at the age of 42, at that time, I already had one foot in the grave, right? :) I had decided it was time to get in shape and start working out more since the older you get, the harder it is to lose weight. Over time I noticed that when my legs would get tired, I coudn't stand on my tiptoes, but when they were rested then I could. That didnt last long, within weeks I couldnt stand on my tiptoes at all and I walked with a limp and the more I walked or over exerted myself, the more my back would hurt. Soon, my feet would go numb at night and I couldn't bend or wiggle my toes. Come September I decided it was time to go see a doctor and he put me on steroids, which didnt help. He ordered an MRI thinking I might have a herniated disk, that came back ok so the next round was getting blood test to check for Diabetes, B12 deficiency and thyroid problems, ALL came back clean and clear. He then told me that there was nothing more he could do for me and referred me to a neurologist. My GP recommended that I get a nerve conduction test. I decided then that it was time to apply for insurance, which I was originally declined for due to a pre-existing condition, which we thought was Sciatica. I then googled affordable health care and found a site where you could get insurance with a pre-existing condition guaranteed. I was approved and set up an appointment with a neurologist. Finally in December, right before Christmas I was able to get in to the Neurologist and he did the EMG and a Nerve Conduction test, asking me tons of questions which all had the answer "No" following. I am a healthy individual who does not have a family history of anything with the exception of Diabetes. Over these last 7 months I was getting more and more depressed, the frustration of not knowing what is wrong with you, all the thoughts that go through your mind, could it be this or could it be that? Cancer was always something that sat in the far back of my mind, but again, no family history of it so I wasn't too concerned. After the results of the EMG and nerve test the doctor said he thought it could be CIDP. Thats when I started hearing a foreign language coming out of his mouth, not literally, but this is a disease I have never heard of before. Chronic Inflammatory Demyelinating Polyneuropathy, a "rare" autoimmune disease where your immune system attacks your nerves. The first thing I did when I left his office was search it on the internet. He sent me for a spinal tap on New Years eve day which confirmed, I had CIDP. Treatments discussed were steroids, IVIG, Plasmapheresis or Chemo drugs, I chose IVIG. I have since been receiving those treatments once a month and have noticed some improvement, but I still have to watch every step I make so as to not fall or trip. I have been doing research on SCT, Stem Cell Transplant. This is a procedure that could cure this disease for good. It is still in a clinical trial phase so it is not FDA approved and not guaranteed to cure it, but so far has had some great results. I would like to have my quality of life back and have this procedure done, but I need your help. Any amount, small or large will help to benifit me getting this procedure. My insurance will cover part of it, but I will still have out of pocket expenses to cover, along with travel and lodging. If there is any money left over, I will pay it forward for the next person with CIDP who needs help either with treatments or to get the SCT. I thank you from the bottom of my heart in advance for any and all help given.

Donations

  • Amna Khalifa 
    • $50 
    • 62 mos
  • Sean Keating 
    • $25 
    • 64 mos
  • Bryan Tindall 
    • $500 
    • 67 mos
  • Susan Krick 
    • $50 
    • 76 mos
  • Kendra Werner 
    • $25 
    • 76 mos
See all

Organizer

Stacey Turley DeMatos 
Organizer
Buda, TX
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