Hi Everyone, It's been a long time since I first posted my story (Jan. 2012). I've read many of your posts and have wanted to share more of my story but I wanted to see if the IVIG treatments the doctor started me on was going to help. I am sorry to say that not only have they not helped but I have gotten much worse in the past several months. I will briefly explain my story since it has been so long. My symptoms started 6 years ago, I began having muscle twitches in my left leg that started in my toes and progressed to my thigh. Then pain began shooting down my leg and I began having trouble sitting. The doctor's thought it was sciatica but the tests were negative. I began having trouble walking due to the pain and could no longer sit or lay on my left side. The pain seemed to encompass my whole left leg. I ended up in a wheelchair 3 years ago and can only walk a couple of steps due to the pain. I have seen 32 doctors and have had multiple mri's, myleograms, nerve conduction studies, etc. that have all been negative. In March 2011, the pain moved to my right leg and then to my left arm. I have nunbness in my upper thigh if I stand longer than a few minutes. I had another Nerve Conduction Study ran in February 2012 that revealed Demylenation in multiple nerves and the doctor diagnosed me with CIDP. He said it was very unusual for pain to be your main symptom especially the severe pain that I was experiencing. In April I had a 6 hour, 3 day IVIG treatment then a 3 hour, 1 day IVIG treatment in May and July (couldn't make the June IVIG). I have had no relief in my pain and my mobility is much worse. I now have to keep my legs elevated (laying down) because of the intense pain when I sit up and my legs are down. I am on strong narcotics but they are having trouble fighting the pain especially if my legs are not elevated. It is very hard for me to lay like this because I am a Type A and my brain does not know the meaning of the words slow down and take it easy. If there is anyone out there who has intense, severe pain as there main symptom please respond to my post, I feel so alone. And if there is anyone who is now confined to a wheelchair please reply, I know there are few of us who have become so disabled due to CIDP.
Hi Happy Camper!
Please know that you are not alone!!! I am new to this site & just figuring out how to reply to people, etc. That being said, I don’t want to leave a long message in case I do not do it properly.
Also, as I see this post is several months old, you may have found some answers/solutions to your problems.
If indeed my post works, I would be happy to pass along what I’ve learned along the way.