I am new to this forum and I am sorry to hear the early ALS diagnosis of carbuffmom.
My father was in a silimar situation, except that he was on 20mg/day Simvastitin for merely a couple of weeks before he started developing myopathy and neuropathy. Blood test showed mildly elevated CK (2-3 times of the norm 200) . Even though he stopped the drug immediately, his symptoms still progressed rather rapidly. Due to the high similarity between the the statin-induced neuropathy/myopathy and the ALS, he went through a series of tests before the doctors finally set their diagnosis on ALS. It's been 2 years since then and my father has completely lost his mobility. He is now in the late stage of ALS.
Having said that, it does not imply that what you have is ALS. Compared to statin-induced neuropath/myopathy, ALS seems to be rather rare. Because they are so much alike, you might want to see experts with speciaties on both illnesses in order to get a better distinguishing diagnosis. I found out some experts, but my father was unable to see those doctors in person for exams and diagnosis. Here are some pieces from the experts that I have contacted:
"I suspect that you are correct about the simvastatin adverse effects on your father. Although most side effects from statins do resolve within a month or two of stopping the drug, this is by no means always the case and I have seen a few patients with prolonged difficulties similar to your father's."
"I am not aware of any ALS cases related to statin therapy but you may want to contact Beatrice Golomb, M.D., Ph.D. regarding this. Her email address is:
bgolomb@popmail.ucsd.edu
Here is Beatrice Golomb's website and the link to her statin study:
medicine.ucsd.edu/faculty/golomb
medicine.ucsd.edu/SES/adverse_effects.htm
"
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Peter Langsjoen, M.D.
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Peter H. Langsjoen, MD, FACC, PA
Cardiovascular Diseases
Research in Biomedical Aspects of Coenzyme Q10
Alena Langsjoen, M.Sc.
Coenzyme Q10 Laboratory, Inc.
Office: Tel (903) 595-3778, Fax (903) 595-4962
1107 Doctors Drive
Tyler, Texas 75701,USA
langsjoen@compuserve.com
ww.coenzymeQ10.org
ww.THINCS.org
ww.langsjoen.com (in construction)
ww.coQ10lab.com (in construction)
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"Thank you for this email. I am very sorry to learn of your father's situation and diagnosis. While there are anecdotal cases in which statin use appears to be associated with the start of ALS, this association has not been confirmed statistically yet. And, unfortunately, we do not know how to treat cases like this, other than to use such treatments as coenzyme Q10. I will keep this important case on file and if I can think of anything useful, I will get back to you. Please convey our best wishes to your father."
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Robert Brown, Jr., MD, D.Phil.
adams.mgh.harvard.edu/cagn/Faculty/brown.html
I hope you can find something useful. Please share with us your updates as well. I sincerely hope that what you have is not ALS.