Reply To: Long Newcomer Story/Guidance Needed

April 9, 2018 at 1:43 am

I am a US citizen living in India. Two weeks I was diagnosed with the Lewis-Sumner subtype of CIDP. My original two diagnoses, however, were Leprosy, aka Hansen’s Disease. It has been a very circuitous three months for me.

I see a neurologist regularly for Cluster Headache Syndrome, and in February I mentioned to him that in December the tip of the fourth finger on my left hand had become numb and tingling. He told me to observe it for any changes, but that likely it would resolve on its own. Three weeks later the third and fourth fingers were numb and increasingly immobile, with the left palm also affected. Then it started with the right foot.

I returned to my neurologist, and he asked, “How long have you been in India? Don’t be alarmed, but when these symptoms are present in an Indian patient, Leprosy is always an initial consideration.”

To make a long story short, two doctors confirmed it was Leprosy, and I was placed on the full regiment of Leprosy medications. The skin biopsy was returned as negative, but apparently this is routine, as biopsy of the ulnar nerve is the only valid indication of infection. The rule is that when you present these symptoms, the course of action is to immediately treat as a potential case of leprosy.

Intuitively, something didn’t seem right to me. A colleague directed me to a particular neurologist who had saved his life, and within five minutes of this doctor reviewing my file, he exclaimed, “This isn’t Hansen’s! You don’t have conduction blocks in Hansen’s!”

Fast forward through a long hospital stay and numerous tests, I finally received the CIDP/LS diagnosis. Had I not followed my instincts in getting a third opinion from a neurologist, I would have spent the next year on Leprosy medications rather than being on the proper course of treatment. The diagnosis has allowed me to place closure on this episode and move forward in battling and recovering. Alongside, I have gained empathy with the plight of Leprosy patients, as I was one for a month…albeit it an incorrect diagnosis.