CIDP-Can you help?

[mayleneb]

I was Dx. with CIDP about 2 1/2 years ago.  I have numbness, tingling, burning and cramps in my legs, feet, arms and hands.  I have been in a wheelchair for 2 years because of weekness.  I am on 50mg of IVIg every 10 days. I find myself fighting with the insurance company to get the treatments because of the costs.  Is there anything else    I can do.  The treatments do make me stronger and I can walk a little after I have an infusion.  However I am not getting better.  As soon as the insurance company stops the IVIg I get worse again.    


This discussion is related to Guillain Barre or not?.

[mayleneb]

Thank you for you response.  I have taken Predisone 120 mg per day for over a year,  along with the IVIg.  I have not seen an immunologist.  I see a Neurologist.  I know that when I don't have the IVIg for a period of time I do get worse.  What is you speciality?  Can you recommend a doctor?  Again Thank you for all of your help!!

[Dr Sharma]

Dear Mayleneb, welcome to the medhelp forum. I can understand your health concern and empathize with you. CIDP occurs due to immunologic antibody mediated reaction and infiltration of inflammatory cells and macrophages causing a segmental demyelination of peripheral nerves. Treatment is symptomatic and includes corticosteroids to reduce inflammation and immunosupressants. In severe cases, you can be given a trial of plasma exchange or plasma pheresis to remove antibodies from blood. IVIg, large number of antibodies are added to plasma reducing the effect of problematic antibodies. You need to have a discussion with your immunologist as to what would be the most practical and cost effective line of management in your condition. Hoping earnestly that you find your answers. Best of luck.