I am a sixty-one year old woman, I started having crazy symptoms of "tingling legs and tight feet" about five years ago. I was seeing several doctors due to some feet concerns from a running injury, and would mention these symptoms to them and they would look at me like I WAS crazy! A neurologist even told me, "yes, you have a neuropathy, but if it's not diabetes...." she shrugged her shoulders in a "I don't know what to tell you" type of answer. Well, I became very frustrated, and the symptoms became more intense. I describe the feeling in my feet as that of them being squeezed in a vice-grip ALL THE TIME!
Although we knew that ALD was present in our family, with two brothers and a nephew with symptoms, we were always told by the doctors, "women carry it, but men get it" - so I had no thoughts that these symptoms would be related. Randomly, my sister was doing some investigating because her 25 year old son was suffering. She came across the following video on YouTube: https://www.youtube.com/watch?v=QoTEB3kDWY8
which explains the disease in the best way I have seen. About in the middle of the video the commentator explains how women can start having symptoms of "tingling legs & tight feet" in their fifties- WOW, it was right in front of me, but I never gave this disease a thought!! It was a good/bad revelation - good to know I wasn't crazy, bad to know I had an incurable disease that will affect me the rest of my life. The missing gene was confirmed through a blood test, and I was able to be seen by a genetic neurologist at Mayo Clinic in Minneapolis.
I am a "naturalist", preferring not to put drugs in my body - especially when they are not proven to help. I continue to work, but it is becoming more and more uncomfortable every day. Sleep is a real problem for me as well, John! I just try to keep a positive attitude and put one foot in front of the other every day. I love to run, and ran three marathons before symptoms started, but running, too, has become more and more difficult.
I would love to hear from any other women that have had AMN hit them in their "Fifties' - I do not know anyone else that I can compare notes with.
If you have not seen this video, do watch it! It was very helpful for our family, with six members at this time diagnosed with the missing gene, the video explains the different types of symptoms involved.
Also, John, make sure you find a neurologist that is willing to learn about the disease, it is so rare, that it does a special doctor to take on the cause! The five living members in our family all see the same neurologist in Grand Rapids Michigan.