I am a 54 year old male. I served 20 years in the Air Force and have been a Corrections Officer for the last 10 years. On a normal day this requires me to walk 4 to 8 miles and climb 20 floors of stairs. My mother was a rare case of Freidrich’s Ataxia, but they would also say she might have had Charcot Marie Tooth. After reviewing her records, my Neurologist believes they may never have completely diagnosed her because she was such a rare case. Her symptoms were many and varied , not covered by one or two disease diagnoses. She survived to 65 years, but had been told she would not live past 35 years. My son was diagnosed at age 2 with CMT, and has severe muscle atrophy in his feet, ankles and lower legs, yet he can still walk and run. My younger brother was diagnosed with CMT and he has gone through the exact same muscle atrophy and severe neuropathic pain problems I am now going through. He is now in a wheel chair. My other brother and a sister show no signs of CMT yet. I started showing signs of CMT about 6 to 7 years ago with the night time cramps in my feet and legs. I would have severe pain in my feet while walking at work. My friends at work always thought it was all the walking we did on the concrete floors. I tried every shoe insert I could find on the market and quite a lot of different work shoes. It was always hard getting something to work for very long. My feet were quick to dry out and I learned that I had to put lotion and socks on them to keep them from cracking badly. I did this at night as well as during the day. About three years ago, I developed severe neuropathic pains in my legs and feet. My arms and hands would go painfully numb at night. It would wake me 3 to 5 times at night. When I told my regular doctor about the problems I was having, he told me that there was nothing that affected the feet, legs, hands and arms that could be tied together. This was wrong because I knew about my Mother’s disease. I was tested by several doctors for diabetes due to the neuropathy. It always came back negative. I started taking Naproxen for the pain in the legs and feet in 2010. I also started taking Hydrocodine, at night only, to help control the pain.I injured my foot running at work to an emergency. I thought it was a sprain because it didn’t hurt much unless I did a double shift. If I did a double, usually walking 12 to 20 miles in that day, then it would swell up and I would take several days off to control the pain and swelling. After 8 months, I finally went to the doctor and found that I had been walking and running on a broken foot. I took 6 months off work to heal the broken bone in my foot, the fifth metatarsal.My sister-in-law noticed that I was walking ataxic like my mother did before she went into a wheelchair. I was starting to do a lot of stumbling and falling. I was having trouble running. I felt as though I had “octopus legs” that I couldn’t control. My balance was going, so I was having a lot of trouble on stairs. I could no longer feel the brake or gas pedal, so my starting and stopping were always jerky. Sometimes I’d be slowing down because I came off the gas pedal and didn’t know it. In August, 2010, they did a Neurology work up, but the electrical tests on my legs, feet and hands showed that I was borderline on the tests. I had always shown borderline on these tests. One doctor did not think it looked like CMT. He did think that I had a “Hereditary Sensory Motor Neuropathy”, he just didn’t know which one. The Neurologist said that with a HSMN there was nothing they could do to stop it.In the mornings, my balance was way off and I would have a hard time walking around the bedroom. I would have to hold onto the bed just to be able to stand. After being up for 30 minutes or so, my legs would improve enough to walk. The Podiatrist had a set of orthotics made for me in September 2010 that helped reduce the pain in my feet for a while. In December 2010, I noticed my feet were “going away”. I was sent to a podiatrist that measured my feet. He could not believe that in only a month, he could see the muscle loss. He said that he had never seen anything like it in his 30 years of practice. He could see that I had a HSMN, but he couldn’t help me. He did tell me that I should try Lyrica for controlling the neuropathic pain. First I tried Gabapentin, which didn’t work for me. I had too many side effects from this medication. I got on Lyrica 25mg twice a day. This helped a lot to reduce the neuropathic pains. It also helped to control the ataxia, stumbling and falling. I found that after a bad night of leg and foot cramps, putting a little Ben Gay on the back of the leg muscles helped get rid of the pain that used to last a day or two after. But this did nothing for the pain in the feet.In July 2011, I came out of work and I felt as if I was done. I was at the 10 level of pain in my feet and I was just short of tears walking to my car. I thought I couldn’t take it anymore!!! The pain in my feet was just too much to take! I went back to my neurologist and he increased my Lyrica to 50mg twice a day. He ordered me a new set of orthotic inserts made for my shoes. I was off work for four days and then I was ready to go back and hit it again. The muscles in my feet continued to deteriorate. I still suffered from neuropathic pains in my legs and feet. I felt like I was being Tasered in my legs and feet. I ran the full list of all neuropathic pains in my legs and feet. My arms and hands continued to be painful and numb at night, still waking me up. In August, 2011 they did my annual neurology tests. The doctor found it amazing that I had lost 50% on the electrical tests and I could feel the changes coming on. With the electrical tests and the foot muscle atrophy now, the doctors finally agreed that it looked like CMT. They do not specify CMT now, but list it as HSMN and there is nothing they can do to stop it.I was starting to drop things. My hands and arms would go numb in the day time. I learned that a medium height boot or shoe helped a little with the foot drop, stumbling and/or falling. No more regular height shoes for me. Also in September, I read that in Europe, a company tested Vitamin E, COQ10 and an experimental drug made from COQ10 called Idabene, on Freidrich’s Ataxia. They had gotten mixed results -- good enough for me, I had nothing to loose at this point. I was getting weaker and wearing out faster. I was taking days off work every week just trying to stretch it out and get my body to last. I was wondering when it would no longer be safe to do my job, as well as drive a car. Stairs were even dangerous to me. My doctor sent out genetic tests for CMT and Freidrich’s Ataxia. In mid September 2011, I started taking Vitamin E - 1000iu gel caps, COQ10 - 400mg gel caps and the doctor said to take Vitamin C - 500mg to help absorb and make the Vitamin E work better. After a week, I noticed that I was walking better and I was less ataxic. I told my Neurologist about this and he said it didn’t make sense. These vitamins are not meant to have these reactions. As each week went by, I noticed that I was improving and getting better. Both my genetic tests came back negative with no known genetic markers. My younger brothers genetic tests came back the same with no known markers. My Neurologist thought I might have some sort of mutation of my Mother’s disease.It is December, 2011 and let me tell you, I am doing so much better! My ataxic walking is good. I can walk a straight tenth of a mile line down and back without coming off the line. My coworkers have seen my improvements and tell me I’m walking like I did before I came down with this. I can once again outrun most of my coworkers when we run to an emergency. I had to quit taking the Naproxen about 8 weeks ago, due to high blood pressure. The doctor had me quit using Hydrocodine and I’ve hardly needed any since October. I can’t remember the last time I had a bad night with leg and foot cramps. I am no longer having neuropathic pains. ( I had one bad day on December 26th with 5 hours of Neuropathic pains that wouldn’t stop, but that’s the only one since the beginning of October. ) I can work an 8 hour shift, drive home and get out of the car without a problem with my legs or feet. I no longer feel worn out after work. My stumbling and falling are pretty much gone. I have a lot better control of my legs now. My blood pressure has come back down. I do not wake up in the middle of the night with pain or numbness in my arms and hands. I still get some pain and numbness in the arms and hands by morning, but I’ll have slept through the whole night. The pain and numbness that I feel now is never the same as it was. It is greatly reduced. My balance has greatly improved. I have no trouble on the stairs now. I am starting to feel the gas and brake pedals again while driving. My driving is a lot smoother now. Other than Lyrica 50mg twice a day, I am not taking anything else for pain, as it is no longer really needed. I still have some pain in the feet, but it is not neuropathic. It is a dull pain, caused from a lack of muscles in my feet. Without much muscle left in the feet, there isn’t much to walk on. After seeing my feet, others wonder how I am able to walk at all. My only real problem is the muscle atrophy in the lower legs, ankles and feet. I’m trying to figure how to reverse this problem, if possible. What I have read so far says it can’t be reversed for hereditary problems.If I can keep going the way I am feeling now, I feel like I can work until retirement in 10 to 12 years. Rather than feeling worse, I grow stronger and feel better as each week passes. I’m writing and sharing my story in the hope that others may benefit from this information and have success. I’m looking forward to my next neurology work-up to see if my electrical tests will have improved, rather than continuing to go down hill.
As well as Lyrica, which has been a God send, I take a multi vitamin; Glucosamine with Chondroitin and MSM for joint health; Omega 3, 6, 9 - fish oil, flax seed and borage oil; garlic for lowering blood pressure; vitamin E, C and COQ10. I have started taking a lower dose of E, C and COQ10 at night to give a longer coverage time to see if, hopefully, it might completely alleviate the arm and hand numbness.This might seem like a lot of extra pills, but they are working for me. Hopefully someone may benefit from some or all of this information.If you have questions, please don’t hesitate to contact me.
My E-mail is firstname.lastname@example.org
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