Wal Gallagher

My name is Wal & I am 86 years old.

Can you briefly share your experience with CIDP?

My journey with CIDP began 10 years ago with sensitivity in the legs and feet and in particular burning feet in bed. I was referred by my GP to a neurologist. I was not diagnosed immediately with CIDP but was prescribed pregabalin for nerve pain and to assist my sleeping.
In 2017 I had total knee replacement of both knees. This apparently aggravated my condition as I had a very slow recovery from the surgery and began to develop the symptoms typical of CIDP, namely loss of nerve function in the feet and legs, tingling, burning, numbness and weakness. My condition continued to worsen and in 2018, after nerve conduction tests and a lumbar puncture, I was diagnosed with CIDP.
Since that time my treatment has consisted of a four weekly cycle of infusions of IVIG and, in addition to larger doses of pregabalin, was prescribed amitriptyline and mycophenolate, and began a programme of daily exercises.
In the years since I was diagnosed, my condition has continued to slowly deteriorate (possibly partly age related). In 2024 I had hip replacement surgery from which, again, my recovery was very slow, and to the extent that my balance is now so bad that I can’t walk unaided. I use a walking stick and occasionally a four wheel walker.

Fortunately I am still able to drive and with the support of my family can live a ‘normal’ life.