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 numbness 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 their 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.
My earliest symptoms was pain in both legs which was thought to either be sciatica or growing pains because it started in my teens. years later as I slowly had symptoms progress and was diagnosed with CIDP I was treated with IV IG and still a.m. I have never had that pain down the back down my legs since starting the IVIG though I have many other symptoms and difficulty walking . What has helped me the most with the pain of neuropathy in my feet and hands is a supplement that is an anti inflamatory called Nopalea.
Like Brad, my first symptom was pain, numbness and tingling in both lower legs. I was diagnosed with a pinched nerve, but the usual treatments didn't help. About a year later, I developed severe weakness, and that was when I was diagnosed with CIDP.
IVIG really helps the weakness. At first, the pain, numbness and tingling were reduced, but not eliminated. But, as I write this, I realize that I am pain-free for the first time in a long time. It happened so gradually, that I didn't even realize the pain was gone. I still have some numbness and tingling, but it is not enough to cause any problems.
thanks so much for sharing, it helps a lot of people!
I am still in a wheelchair and suffer with leg pain. My pain is alot worse if I'm up in my wheelchair or riding in a car with my legs hanging down. I am still on 50 grams of Gammunex every 10 days. Plus 100 mg of Cellcept, 400 mg Tegretol ER, and 300 mg Nycenta and day. This helps with the pain but does not make it go away, just keeps me from pulling out my hair. LOL.
There is no effective treatment for CIDP, but what you have to do is to try and identify what prompted your body to start the demyelination process. Your doctors eliminated sciatica, but you should take a broader sweep at what caused your condition. Once you have identified the problem, you have some hope of a cure, but not ny neurologists as the cause would be outside their realm of expertise.
In my case I was able to identify the cause of CIDP as an ingrowing toenail, and eliminate the cause, and I am much better and have no ongoing deterioration. I spent 5 years being poisoned by Neurologists, without any logical hope of success.
This is the only logical route to go
I have severe pain as a main symtem as well. Not only feet but spinal pain as well. Walking or standing much at all feels like walking directly on bone despite my padded slip on sandels. The pain in my back moves around from high to low.
I had two emg studies that show axon damage as well as meylin. Diagnosed in March of this year. My symptoms came on very suddenly. I know the day I first felt tingling in my feet. Never had any neuropathy symptoms in my life prior to Jan 20th 2012. They say I'm headed for a wheelchair and it may be so. I take no meds but am about ready to give in and forget about addiction. IV steroids did nothing for me, IVIG gave me Chemical meningitis and put me in hospital for 6 days. i'm told I can never receive ivig again. I go to the university of MO hospital now to try and get final diagnoses...
Hi! I've had verying degrees of pain, but primarily in my legs. I too keep my legs up at times for relief. My point is that you aren't alone. I mean no disrespect but there is no cure for CIDP and it is not known to the medical community as to what triggers exaserbations and what doesn't. Science isn't that advanced at this point. It is not even agreed upon as to exactly how the body demyelinates. Even the parameters of CIDP have yet to be determined do to the rarity of cases and research available. Many people do well after IVIG infusion, plasmapheresis, and / or immunosupresant therapy. As for myself, I have had partial success with high doses of prednisone and Imuran. I felt I had little to no success with IVIG infusion and plasmapheresis. However, we are all different. Again, you are not alone.
I am one of the few people who has been able to stop the advancement of CIDP, however the monitors of your web-site have censored my story. They have it on file, so ask them.