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The mail box |
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From California-- “My symptoms (severe muscle pain) first manifested around 1981. I was in my early 30’s, attending college full-time in the day, working as a waiter full-time at night, and riding bicycle 6,000-7,000 miles a year as my sole means of transportation. The student medical center diagnosed an infection of the subcutaneous tissue layer. I continued to ride as before, even after graduation, for a total of 10 years. Tests at Kaiser Sports Medicine showed elevated CPK during episodes. I also displayed myoglobinuria during all episodes. Other tests performed by Kaiser were to check for abnormalities in the nerves in my legs (negative) and a treadmill test (cardio-pulmonary function of an “Olympic athlete,” according to the doctor performing the test.) I was eventually sent to San Francisco to Dr. Lazier who diagnosed McArdle’s by interview and review of records. This was around 1985. I quit riding bicycle 7 years ago as the pain was too much during episodes and because Dr. Lazier said I could damage or shut down my kidneys. The worst episode lasted for 2 weeks. My CPK levels during episodes have reached levels of 20,000. The muscles involved have been from my buttocks through the arches of my feet. My arms have never been involved but have felt very strange at times. I have never been hospitalized for treatment. I found the McArdle’s Web site last year and learned that a muscle biopsy was needed to confirm McArdle’s. I contacted the local chapter of the Muscular Dystrophy Association which arranged a visit to Stanford Hospital. The biopsy was performed in July of 1999 and the results were explained to me 2 weeks ago. This biopsy showed CPT, although further tests are being done to determine type. I have been a skier for 42 years and continue to participate in this sport. There have been days when I have quit skiing early as my legs started to feel “weird” and I don’t wish to risk an episode. I am 52 years old, never married male.” From Florida-- ”Every day I live with a lot of pain. I went to New York in May of 1999 and now I take a supplement for the pain, which at the beginning helped for about 3 months. Then the pain came back, not quite as bad as before but the pain is back and now I’m on pain medicine. I have no appetite and always feel full, only weigh 170 pounds. When I was first diagnosed in 1997 the doctors put me on a high carb diet and I lost 20 pounds. So they told me just to eat what I wanted just so I would eat. Now I’m 18 years old and I can’t stand for long periods of time or sit for long periods of time. I get depressed a lot too, but I’m working through that. I used to play baseball for my high school and I was always in a lot of pain after the games. I would go home and go to bed. But now I’m out of school and I’m going to start college in the fall. One day I hope and pray there will be a cure for this thing they call CPT II.” From Illinois-- "My doctor talked to a specialist at Duke who suggested taking supplements of uncooked cornstarch. I began taking 4 tablespoons of cornstarch twice a day. I felt the impact almost immediately. The basic idea is that the cornstarch acts like time-released energy. I used to have slight muscle pain when I had to go 4-5 hours between breakfast and lunch. Now I take 4 tablespoons of cornstarch in orange juice with breakfast and I have absolutely no problems between breakfast and lunch. I used to take the second dose before bed (so that I would have energy to burn while sleeping) but I have since found it more helpful to take it in the evening right before I go out dancing or to the gym or for a walk. The cornstarch has not stopped my major episodes however it has made a drastic effect on my less serious episodes. When my muscles begin hurting I quickly drink down an extra serving of four tablespoons of cornstarch in orange juice and then drink a high sugar soda and the muscle pain subsides within about 30 minutes. When I first began this treatment regimen I was bothered by the taste of the cornstarch in juice. I just had to tell myself that I needed to do it. Now orange juice tastes weird to me when it doesn't contain cornstarch." From England-- “I am a student at North London University. My name is Neil Dawson. I am coming up to my 21st birthday, and to be honest, it feels more like my 50th! I have been able to find out more about my illness by reading these informed pages and information supplied by other people. That in itself is a comfort, because being at University away from my family becomes lonely when this illness strikes. At least I know other people have this problem, and I have found possibilities of dealing with this. I have actually only just come out of hospital after another attack. I had to walk around 250 yards down Holloway Road in order to get a taxi for a blood test. Around 80 yards and 2 flights of stairs away from my destination is when I became desperate. I wanted to phone an ambulance because I was finding it so difficult to get to the place where I could get a taxi to hospital. It was at hospital I was told that my CK levels should be in the region of 200 for a normal person and my levels were 122,000. I was finding it difficult to breathe and they finally put me on a drip and gave me glucose and sodium chloride. The pain is still here today but at least my kidneys have been flushed and are not blocked anymore. I guess I will continue to look for other informative sites that deal with this complex issue, and I would like to thank the makers and contributors of the web site for giving me more information than the doctors seem willing to give, or even know.” From Israel-- “My name is Fabienne. I was born in Belgium and have lived in Israel for the 20 last years. My biggest problem with my CPT deficiency is not the lack of physical strength but the lack of psychological strength to deal with the weakness. I remember too many traumatic experiences from my childhood when nobody could give a name to my problem except laziness. I remember real pains and hours of efforts people forced me to perform despite the fact that I felt almost paralyzed. And today, now that I’m 37 years old with a high status in my job, with three kids, friends and everything, I’m terrified when someone has a nice suggestion about some walk or excursion, and every time I feel weak (almost once a day), I feel inferior, parasite, guilty and shamed. Of course CPT deficiency is also an acute objective technical problem. I just have not enough energy to perform all the duties of the day, and every change in the routine (flu, husband not at home, etc) is a real danger. Imagine there will be a medication!” From Arizona-- “When I went away to college I was a long way from home, and while I didn’t know what I had then, I definitely could have benefited from a few pieces of wisdom. One is to eat right, which is much harder at college, and often goes against the grain of typical college existence. Another is to listen to your body and to try not to succumb to peer pressure. When I look back, some of my worst episodes were at college, and some of the most awkward excuse making scenarios took place. It was like I was inferior to my friends if I couldn’t deal with 15 sets of racquetball! It’s hard at that age too, because those are the years when you’re invincible.“ From Canada-- “The most terrifying part of this illness has been that no one knows what to expect and there is no one to talk to who knows what I am going through. The uncertainty and the feeling of isolation is very difficult for me, as well as the need to completely change my lifestyle. Most days I am a very positive person, and I have to admit that I even like some of the changes that CPT has brought to my life. But some days I need to know that I am not the only person who can’t do certain things when before I was the first to do them. I need to remember that it’s not the end of the world because I can’t be a firefighter or mountain climber--I never wanted to be a firefighter or mountain climber! Slowly but surely I am coming to terms with these realities.” From California-- "If there are so many mutations, how can a doctor say this is not typical of CPT? Can't one person have symptoms with extreme use and another person have symptoms that seem constant and apparently are triggered for no reason? Sometimes I feel so stereotyped. I don't like it when authorities tell me how I should or shouldn't feel. My own body does a good job of that." From Hawaii-- "People will say to me, ''What do you mean you can't be the soccer mom? What do you mean you can't go on this excursion with the kids? what do you mean you're on disability? You look great!' There's a lot of guilt. I end up saying yes when I probably should be saying no. Then I end up in the hospital." From Arizona-- "When my health insurance balked at letting me see a geneticist, I said, 'Look, in 1996 I probably cost my insurance company a 100 grand. It would be worth your while to let me see a geneticist for $400 so I can learn how to deal with this.' I approached it that way. They tend to see anything genetic as extravagant or unnecessary. I brought it back to reality by bringing it down to dollars." From Washington-- "I was told there were only 2 people that were like me and they died at 28 years and 42 years. I am 55 and a male. I am having symptoms constantly. I am trying to help control them through a very low-fat, high-carbohydrate diet. I can’t walk for more than a few minutes. I can toss the ball twice a day for my dog. I feel fatigued always. I am going to a dietician now—I am about 15 pounds overweight. I feel depressed a lot. I was a teacher for 24 years and had to quit. I have a wife who is very supportive (33 years), two children and 6 grandchildren and a son-in-law and daughter-in-law. I just wish I could feel better." From Kansas-- "Neil’s CPT story from London reminded me of my son’s medical emergency in London last November. He’s 26 and was in London on business. The night before he was scheduled to fly home he got a soaring fever. Inevitably the muscle breakdown kicked in. Not knowing where to go in London for medical help, he managed to get to Gatwick, but collapsed at the check-in counter, unable to walk any further. Delta did not want to let him on the plane. They thought he was too ill to travel. When a Delta rep called us--at 4 a.m. Kansas time--I explained that he had a rare disorder and needed to get home to his doctors in California as soon as possible. After that they were great and gave him anything he needed on the flight home. A friend met him at the San Diego airport and took him directly to emergency care. He recovered in about 2 weeks. Because he still travels some for his job, his doctors have given him a detailed letter to carry wherever he goes. That should help him get appropriate care if another emergency occurs, in or out of the states.” |
For more comments from people with CPT deficiency, visit Reader
reaction, Lifestyle
survey results, Diagnosis
survey results and Triggers
survey results.
For CPT deficiency case histories written in journalistic style, visit Seeing
red, Anatomy of an
attack, Half time, Running
in the family and The
great Alaska kick-start. |
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