This is my first post on this forum. I am a 30-year-old male from the Pacific Northwest who was diagnosed with AMN in the summer of 2015. I had been experiencing symptoms throughout my twenties, and my wife, a nurse, finally convinced me to find out what was going on. My grandfather had AMN and passed away at 67 from complications. My mother is a carrier, and has experienced some symptoms, primarily balance issues and leg spasms.
My symptoms include pain in my lower extremities, adrenal insufficiency, balance issues, leg spasms, urinary urgency and frequency, muscle weakness, and fatigue. I am currently able to walk without assistance from a cane, but it has become somewhat more difficult in recent years. I might trip over my own feet or stumble on the stairs at home about once per week, usually catching myself with my hands. I recognize that I will likely need to start using a cane within the next few years, as my ability to walk and balance inevitably become worse.
Recently I have been experiencing a fair amount of pain in my feet and legs, particularly my left foot. It sorts of comes and goes and varies in severity. It sometimes feels like a burning sensation, or a stinging or shocking feeling at other times. I would be interested to hear suggestions for treating this pain. Perhaps massage could be beneficial.
Apart from walking issues and pain, another frustration is urinary issues. I struggle with frequently needing to urinate, particularly at night. I have to set an alarm for midnight, 2:00 am, and 4:00 am so that I can wake up to pee, or I may "have an accident". Fortunately I work in an office, so a restroom is always close by during the day. I am not really interested in botox injections or self-catheterization (both of which, frankly, sound terrible), at least as long as my symptoms are manageable.
The only medication I have taken since my diagnosis is hydrocortisone for adrenal insufficiency. I currently take 20mg in the morning and 10mg in the evening. I have found that I have not felt ill as often since beginning this medication, which is obviously a positive.
One of the frustrations with this disorder/disease is that it manifests itself differently in individuals. Even knowing how it affected my grandfather does not really offer much insight into how it will progress with me. He began using a cane in his mid to late 30s, then a walker and finally a motorized scooter in his 40s. What has helped me greatly since my diagnosis is remembering what a great man my grandfather was, a pillar in his church and community. He certainly did not allow AMN to define who he was as a person, and it is my goal to live my life in the same way.
I have read posts and comments on this forum on occasion over the past few months, and finally decided that it was time to join and introduce myself. I look forward to being in communication with others on this forum from time to time, and hope to lend support and encouragement when I am able.