Medical Mystery #3: How Crazy Toe Led Me to Help Others
I was in my 40’s. The strange problem began with some tingling at the end of one toe. I padded my foot so I could continue the running I love. But running would bring Crazy Toe from a state of tingling, to pain, to numbness. Over many months, the symptom extended along the length of Crazy Toe, to adjacent toes, to the ball of my foot, to my instep. Runners get these things, I figured.
The next clue that something was amiss: During my 50’s there were tiny changes in my urinary pattern. The time between trips to the bathroom got shorter. Starting the flow would take a few moments longer. I’d “go,” but have to return the bathroom minutes later to “go” again.
In my later 50’s, I started needing a mid-day nap to remain alert at work.
I saw the classic A-P-B-D indicators of Adult Polyglucosan body Disease, APBD.
• A – Ashkenazi Jewish descent; Age 40-60
• P – Peripheral neuropathy (numbness, weakness, or tingling in the toes, fingers, hands, and/or feet)
• B – Bathroom frequency beyond the norm, or difficulty with bladder control
• D – Diminished energy
I tried a quick saliva test, and my suspicion was confirmed. But unlike my other family members, I did not waste time with a maze of doctors, tests, useless surgeries, and ineffective medications. I had an answer and proceeded forward.
I directed my energy to helping the staff and volunteers in the APBD Research Foundation raise awareness among the at-risk Ashkenazi Jewish population. I connected with other APBD patients from around the world to form a support group. It feels great to be with others who understand what I’m going through. I’ve met awesome researchers who are hard at work in the US, Canada, Israel, Spain, the UK and other countries on research that will bring about a cure.
In three blogs, you’ve read about the A-P-B-D indicators for the disease that’s known as Adult Polyglucosan Body Disease, APBD. If you believe you have the A-P-B-D indicators, a simple saliva test now settles the question. Write to info@apbdrf.org to arrange for a test kit to be sent to your home. And if you have APBD, know that the APBD Research Foundation is hard at work to get to a cure. You can help us move forward, too. Everyone who gets diagnosed should click on the red button at the top of our homepage, www.www.apbdrf.org, to sign up with the Patient Registry. Also on our homepage, you, your family, friends and colleagues will see an orange button that helps process a donation towards research expenses.