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Medical Forum / General / General / July 2005Questions About Metabolic Diseases
I am trying to learn about metabolic disease, particularly McArdle's Disease. I have read that there are several tests used for McArdle's Disease, but it is not clear to me if all the tests have to be performed for a diagnosis, or if there is just one test (of many) that would lead to diagnosis? Would it be unusual for McArdle's Disease to affect one side of the body more than the other side? Brain tumor has been ruled out through MRI. Would tendon inflammation (particularly DeQuervain's) be unusual in McArdle's Disease? Are there any metabolic diseases that might be associated with non-muscular symptoms, such as feelings of grogginess, dizziness or other distracting or inhibiting perceptual experiences? Were you diagnosed with McCardle's disease? Have you taken a statin medication? Zee > I am trying to learn about metabolic disease, particularly McArdle's > Disease. I have read that there are several tests used for McArdle's [quoted text clipped - 12 lines] > non-muscular symptoms, such as feelings of grogginess, dizziness or > other distracting or inhibiting perceptual experiences? > Were you diagnosed with McCardle's disease? I don't see what relavence my personal condition has to my questions at this point, so I wonder why you ask? Anyway, the answer is, No, I have not been diagnosed with any metabolic disease. > Have you taken a statin medication? Yes, and if my doctor had her way, I would still be taking Tricor. She changed my prescription from Lipitor after I complained of feelings of muscle weakness (the weakness felt like the blood was draining from my whole body), though she said that she was doing so despite the fact that she did not believe that Lipitor would cause such an affect. It was too bad; I own stock in Pfizer. I am supposed to be taking half a Flexeril tablet, too (that is, 2.5 mg of a 5 mg tablet). My Primary Care Physician (PCP) and my Rhumatologist believe that my body aches might be relieved by improving my quality of sleep. They are probably correct in that, but Flexeril (5 mg dose) makes me sleep about 20 hours a day. Researchers in statin neuromyotoxicity have said approximately 25 per cent of those who have had a neuromyotoxic adverse reaction from statins (Lipitor, for example) have had a metabolic disorder such as McCardle's Disease triggered by their statin use. Meaning, they were asymptomatic genetic carriers, but now have full blown McCardle's or CPT2 type disorders. Such a person should see a specialist in neuromyotoxicity caused by statins. Three in the U.S studying this are: Beatrice Golomb UCSD Statin Study The UCSD Statin Study is asking for help from anyone taking statins and experiencing adverse effects: "Those of us in the University of California, San Diego (UCSD) Statin Effects Study group, headed by Dr. Beatrice Golomb, are conducting a research study to learn more about the side effects and symptoms of cholesterol-lowering medications, including statins. Though statins are the best selling prescription drugs in the world, and have important benefits, there has been little attention to their adverse effects. Information provided by people who may have had adverse experiences on statins/cholesterol-lowering drugs will help us greatly to better understand these adverse effects - their character, impact, time course, recovery pattern, what factors may increase or reduce risk of developing them; and what factors may favor (or not) their recovery. It may also help us better educate doctors who care for patients. If there is a chance you might be willing to help this effort by sharing your experience in a survey, you can contact us at statinst...@ucsd.edu or (858) 558-4950. You can also visit our website at http://medicine.ucsd.edu/ses. We would truly appreciate your help. If you know of anyone else who may have experienced adverse effects on statins and may be interested in participating in our study, perhaps you might be willing to pass on our contact information, and let them know their input can be of great help to us. Please do not hesitate to contact us for other information about our research regardless of whether you decide to participate in our study Sincerely, UCSD Statin Effects Study Staff ~~~~~~~~~~~~~~~~~~~~ Dr. Paul Phillips http://www.impostertrial.com/physician.htm (Is Myopathy Part of Statin Therapy?) contact information within neuromyotoxicity of statins cardiopulmonary and statins ~~~~~~~~~~~~~~~~~~~~ Dr. Georgerine Vladutiu http://www.spiralnotebook.org contact information within neuromyotoxicity of statins McCardle's and CPT2 disorders triggered by statins Zee > > Were you diagnosed with McCardle's disease? > [quoted text clipped - 18 lines] > sleep. They are probably correct in that, but Flexeril (5 mg dose) > makes me sleep about 20 hours a day. > Researchers in statin neuromyotoxicity have said approximately 25 per > cent of those who have had a neuromyotoxic adverse reaction from [quoted text clipped - 3 lines] > Meaning, they were asymptomatic genetic carriers, but now have full > blown McCardle's or CPT2 type disorders. Thank you for providing that information. It may prove useful to me in the near future. But, I would also be grateful for answers to my original questions. FWIW, the only new symptom that I associate with statins is the sensation of muscle fatigue and mild pain even when I was at rest. It is also possible that my bout of severe full-body fatigue over the last year was associated with the statin drugs I was taking (which is the reason that I stopped taking them completely). However, I have had a cramp in my right leg for 23 years, and I have been trying to figure out the chronic pain (generally in my right side) for nearly as long. I only took statin drugs for a relatively short time (several months to a year). BTW, I also took Gemfibrozil, but I can't remember the sequence of all these drugs I have taken. My PCP suggested that I look into treatment at a fibromyalgia clinic, but the exams (there are 2 required) would cost $600, and my medical insurance would not pay for it. My Rheumatologist also doubts that I suffer from fibromyalgia, because (he says), if I did, I would be unable to endure the pain of even mildly touching any place on my skin. (I wouldn't be too harsh on him; he did diagnose and treat my DeQuervain's immediately on looking at my wrist.) They can diagnose this as De Quervain's, that as fibromyalgia, and something else as as another thing. But it all adds up to statin syndrome. What you are describing is what so many others who took statins experienced, both with the side effects, and the poly-separate diagnoses. Not everyone who takes statins has this panoply of side effects but those who do have to look at the whole, not each side effect as being something separate. People who have had this reaction to statins have had it linger for several months to years. You really must contact Dr. Golomb's Statin Study (links in a previous post to you) for some explanation of what is going on with you, what you can do about it and how they can inform your physicians to help you with treatment to recovery--as much as that is possible. Dr. Golomb's Statin Study is in contact with the other researchers in this area and can direct you. You might want to subscribe to the Yahoo group Stopped Our Statins where all the posters are people who have similar adverse effects to you, and been diagnosed with De Quervains, tendonitis, myopathy, ocular myasthenia, dizziness and falling, gastrointestinal disorders etc. Statin adverse effects, including those you describe; from Medline: http://www.freewebs.com/stopped_our_statins/StatinFAQ_031305wTOCv4.pdf Zee > > Researchers in statin neuromyotoxicity have said approximately 25 per > > cent of those who have had a neuromyotoxic adverse reaction from [quoted text clipped - 28 lines] > (I wouldn't be too harsh on him; he did diagnose and treat my > DeQuervain's immediately on looking at my wrist.) Well, I went to my Primary Care Physician today, and told her that I would like for her to rule out McArdle's Disease. She listened to me describe my symptoms, went over my medical history for the last year, checked my muscle strength in my arms and legs, and then said that she believed I should see a Neurologist for further diagnosis. The odd thing is, my last PCP also made that recommendation when I complained of muscle pain. What is not clear to me is, what is the Neurologist supposed to do? Why would a Neurologist know anything about muscle or joint pain? Liver dysfunction, check enzyme levels. Or any med may be potential culprit, some more likely than others, eg, statin. Diabetes, advanced, may cause nerve damage, leading to numbness or sensory-response impairment. Endocrine disorders may affect your metabolism, central and peripheral, causing grogginess, etc. > I am trying to learn about metabolic disease, particularly McArdle's > Disease. I have read that there are several tests used for McArdle's [quoted text clipped - 12 lines] > non-muscular symptoms, such as feelings of grogginess, dizziness or > other distracting or inhibiting perceptual experiences? |
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