About me

My name is Bill Corr, and I’m from Tiger’s Bay, North Belfast, Northern Ireland growing up during the infamy of the troubles. I was diagnosed with McArdle’s disease in 1991 at the age of 32, though I had been suffering from the classic symptoms of McArdle’s disease from the age of 10, and myoglobinuria from about 18 years of age and what is the case for most McArdle’s patients, most diagnoses don’t actually happen until the late 20s and early 30s in the life of the sufferer even though symptoms have been displayed from an early age.

 

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4 Responses to About me

  1. Gen. says:

    Hello,
    I found your site during my extensive McArdle’s searches. My son had symptoms since about age four, but his first bout with rhabdomyolysis was at about age 8. GPs didn’t think much of his complaints of muscle pain and said, “It’s just muscle cramps.” Well I KNEW that much. And with discolored urine at the ER he was sent away with antibiotics for a kidney infection. I wanted to go back to the ER the next morning and thank goodness I did. One doctor knew what it was so they kept him on an IV drip for four days, saving his kidneys. Fast forward to age 12. We’re still trying to get a definitive diagnosis (insurance coverage was an issue for a while). He’s being seen at UCLA now by an incredibly nice, personable doctor, a professor of neurology. The first neurologist he saw gave my son a quick diagnosis of CPT II Deficiency. That was with no bloodwork at all. He was diagnosing based on my son’s symptoms and a normal EMG. He advised a high carb diet. But, that high carb diet just never seemed to help my son. It didn’t seem to hurt though. And the same with sugary drinks. Now the new doctor wants to “run” with that diagnosis because of the trusted professor that quick diagnosis came from. But, that professor had not observed my son’s consistently elevated CK levels (around 740 to 1,040, one as high as 3,500) OR my accidental discovery of the help that protein gives him. (I told the new doctor I really think it’s McArdle’s, but you know how much docs like it when a person self-diagnoses) My son can’t even walk 20 feet through a parking lot without being fueled up on protein. If I give him at least 15-20 grams of protein and wait about 30 minutes, then he can walk with me, like a normal person ( it’s like a miracle) through a grocery store for 30-40 minutes with NO complaints. And for years I’d kept him off proteins because they usually have fats and I thought he had a defect in lipid metabolism! Thankfully, at the last minute his new doctor said he’d also order preliminary bloodwork that would point to a metabolic myopathy like McArdle’s. Yes! My questions for you, when you have the time are: please forgive me if this information is in your posts- Are your Creatine Kinase levels always somewhat elevated, have you ever had a normal EMG, and how much does protein help you? I did find your info on that in a post. It seems that McArdle’s affects sufferers in different ways and protein doesn’t always help every one. But, I think the only metabolic muscle diseases that have had any help from protein are glycogen storage diseases. The other two GSDs, other than McArdle’s, that are helped by protein do not fit my son at all. Also, how high has your CK gone when in rhabdomyolysis? I think my son came close to breaking a record with his level. Also, if my son does some sudden intense strenuous movement without being fueled up, he will have a swollen, somewhat locked-up muscle the next day. Is that familiar? If my son is never officially diagnosed I will just tell people he has McArdle’s. It fits him and it’s easier than glycogen storage disease or metabolic/mitochrondrial myopathy. Thank you for your time, and my heart goes out to everyone with these issues.

  2. BJCORR says:

    My CK hovers around the 1,500 mark, which will rise after anaerobic activity, but has been over 200,000 when I was really bad. I have never had an EMG test. I had a muscle biopsy which was consistent with McArdle’s with a build up of glycogen within the muscle. I also had a anaerobic arm test. Yes when I was younger I use to experience swollen muscles mostly in my arms after exercise which would be stiff for a few days after. Yes I did try high protein diets via supplements when I was younger and did feel more tolerance towards exercise, but at the sametime I have also tried the GI diet and felt similar results. Struggling for a diagnosis is a common experience amongst McArdle patients. If you are on Facebook there is a McArdle’s group which can be helpful. http://www.facebook.com/groups/McArdleDisease/ hope this info is of use!

    • Gen. says:

      Thank you for your reply. My son’s CK was 195,000, so not a record breaker. His current doctor thinks that is too high for McArdle’s. Apparently not. Once again, thank you!

  3. Mckyle says:

    Hey Bill. Just wanted to see if you still check this page. I have McArdles but have never met, or talked, with anyone else who has it. If you do still check this page, please email me – would love to have a discussion with you. I’ve actually found some incredible ways to help deal with the disease that may or may not help you. Thanks and good luck.

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