I am new to CIDP. I have not been diagnosed yet but my doctor thinks that I have CIDP. I have been feeling really scared and alone lately so I thought I would share my story.
I am 20 years old and in college. A year ago I started having episodes of leg weakness so bad that I could barely walk some days. Then in February 2012 the weakness got so bad one day that I could not stand a all. My legs burned like they were on fire and my hands tingled. I stayed a week in the hospital and they thought I had Gillian Barre but my EMG came back with only a slight abnormality with my left leg so they said it wasn't. The only other tests they did were an MRI of my brain and spine and blood tests. I didn't really get better but they sent me home anyways saying it was all in my head and I needed to de-stress. I tried that but I never got better. Over the next 6 months I went from doctor to doctor and they either told me it was being caused either by stress or they simply didn't know. My legs got so weak that they became completely paralyzed and I became wheelchair bound. They continued to burn terribly despite losing most feeling in them. Eventually all I could do was stay home and lay in bed all day.
Then in August they miraculously started getting better. In another month I could walk again. They were still weak but I could walk. I thought whatever it was was gone so I went back to school. Then over a few more weeks my legs started to get very weak again and I started to have trouble walking until one day in late october I could not move them at all. Since then I have been having terrible burning, stabbing pains. My lower back hurts as well. The pain radiated down my legs and sometimes up my spine like my spine is on fire. Pressure on the bottom of my feet sends shocks up my legs. Other times my legs feel like they are submerged in ice water. I am also really tired all the time.
Today I started getting weakness in my hands. In the past I have only had tingling in my hands but today I kept dropping things and I couldn't even make a fist my fingers were so weak. This is really starting to scare me. I feel like I'm going down hill really fast this time. Despite this I really want to finish this semester. It is hard enough to live by myself and be confined to a wheelchair but now that my hands are going I am afraid I won't be able to finish my classes and I only have a couple weeks left but if my hands get too bad I won't be able to do anything.
I have a doctors appointment with a new neurologist that kind of knows about CIDP in 3 weeks. I'm really afraid that this doctor won't know what to do with me like all the others I've seen and I'll just keep getting worse. I've been struggling to find an answer for a year. I found CIDP doing research and I talked to my doctor about it and he thinks it probably is but he doesn't know much about it.
I've just been feeling really alone and scared since no one has been able to help me and I'm afraid if treatment isn't started soon that things will get really bad. I just don't understand how the doctors can just send me away with "I don't know what to do with you. Sorry." and expect me to just continue with my life and not help me at all.
Has anyone else had this same type of experience with doctors? I just don't know what else to do and I feel so lost and scared. I'm stuck in a wheelchair, unable to move my legs they're so weak and in constant pain. My body feels like it betraying me and giving out and no one will help me.