Hi I'm new to this forum I'm looking for some answers about Lewis Sumner syndrome is this what cidp is I'm confused? as I've seen many neurologists and they all tell me about different symptoms of cidp I was diagnosed back in 2009 I've been medicated with prednisolone which I was none steroid responsive then I tried ivig which I had a allergic reaction to that line of treatment was stopped. Ive had several appointments since and my symptoms are getting worse I.e numb fingers and toes I have tingling in my arms and legs,I also have numbness in my lower left leg to which the consultant I seen last said was cidp or Lewis Sumner syndrome he stated I could of been misdiagnosed can anyone help thanks woz x
I found on wiki that An asymmetrical variant of CIDP is known as Lewis Sumner-Syndrome.[2]The Lewis- Sumner syndrome (LSS) is a dysimmune multifocal demyelinating sensorimotor neuropathy. It should be considered as a clinical asymmetrical variant of chronic immune demyelinating polyneuropathy (CIDP). says CIDPUSA.org. So With reading this it would seem it's all the same. Hope this helps
Hi. I am diagnosed with Lewis Sumner. Another name for it is madsam. You can find more information under that name. It is a rare variant of cidp. The disease process is a little different in that sensory nerves are more involved compared to cidp, which is predominately motor. Also, it can be asymmetric, although I felt both sides were equally horrid. It is said to be associated with another disease. I had anemia.
I had a bad reaction to ivig too and they switched brands. I was given high dose prednisone along with the ivig and the rate was significantly lowered to make it tolerable but not easy. Fortunately, I have figured out triggers and have been medicine free for almost a year.
Lewis Sumner is responsive to the same drugs as cidp. Like cidp there is not one treatment that works for everyone because the causes are many and often unknown.
I can't count the neurologists I have met from two major medical centers. I still see one I have had from the beginning. I have included an integrated doctor. Two different approaches have made all the difference.
Hi and thanks for your replies which are helpful to my illness I appreciate any additional information I.e can I sit my driving test with lewis-sumner syndrome in the uk ?