My success story so far

I’ll share my experience from symptom to diagnosis in hopes that someone who reads this can perhap recognize similar symptoms and it helps speed them to diagnosis of their condition and to treatment and recovery.

More than a year ago I began to experience periodic numbness in my fingertips.  It began in my thumbs the later spread to all fingers in both hands.  The numbness gradually became more persistent to the point where I always experienced some level of numbness and some days were worse than others.  That went on for more than six months.  This past March I started to experience numbness in my feet as well.  I also noticed some weakness in my arms and lower legs.  This is when I first went to see my doctor.  He ordered blood tests and sent me to a neurologist for a nerve conduction study.

The nerve conduction study indicated abnormal function in the nerves in my arms and to a lesser extent my legs.  The neurologist was unable to explain this but ordered additional blood tests including glucose tolerance test to rule out diabetes.  A follow up visit to the neurologist led to a recommendation to see another neurologist at the KU Med Center in Kansas City.

One of the blood tests showed an indicator for scleroderma so I was sent to a rhumitologist even though I had no other symptoms of this condition.  The second visit to the neurologist and then the rhumitologist took roughly eight weeks all the while I was getting weaker in my hands, arms and legs.

I was having difficulty doing buttons, writing was difficult and my gait was badly affected along with my ability to climb stairs.  By the time July came around I was noticing week to week deterioration in my abilities.  I had slap footed gait, meander walking, poor balance little stamina.  My stride was very short and I could not move quickly and I really had to exert myself just to walk or put on my shoes and socks.

My doctor agreed to refer me to the KU Med Center and I was scheduled for an appointment in December(!)  I was not very optimistic whether I would be walking in five months and pressed to get in sooner.   I explained that my symptoms were worsening by the week and asked that I be put on their waiting list.  I was lucky to get an appointment within a week. That was late July

I was diagnosed with CIDP during my initial visit to KU July 23.  I had CSF checked to confirm July 30. I began IViG Aug 6th.  The plan is to have IVIG once monthly.

On Aug 13 I noticed  step-wise improvement in my walking and I have seen steady improvement in the numbness in my hands and feet.  The numbness in my fingertips is almost gone and the numbness in my feet is perhaps 70% of normal.  My strength has begun to return and I can walk normally for moderate distances.  I can’t run or jog yet but I’m hopeful that will return with time. 

I thank God for the blessing of healing.

I am very thankful to Dr. McVey and the staff at the KU Med Center.  I hope many of you can experience a quick return to health as well.