ALS-like symptoms from Vytorin

[carbuff]

My mom has been on cholesterol medication for almost 15 years. She is only 48 years old. The medicine she has been on ranged from all different types of statin drugs. The last being Zocor and then a switch to Vytorin. She has always suffered from stomach problems and then the last couple years she has noticed muscle weakening in her hands and cramping. After vigorously exercising regularly, the problems seemd to get worse. There is not much muscle left in her hands and she finds that her arms are very weak. Her muscles are easily tired and after a recent EMG she has noticed twitching throughout her body. She also seems to have slurring in her speach and difficulty writing.

Basically the doctors are leaning towards ALS. I just have a hard time believing that this is the answer. Could it be possible that these really are side effects from the Statin Drugs?? Suppossedly her EMG results were not great and the last doctor she saw seemed to think it was ALS.

She has been off the statin drugs for 2 months now. Her symptoms are not any worse...they have pretty much stayed the same.

If ANYONE has, or knows of someone with similar symptoms, PLEASE contact me.

I am so worried about her, but refuse to believe that she has a life threatening disease. I'm just trying to get my mom back.

Thanks.

[eml256]

hello, I too have heard of ALS symptoms from Lipitor. I corresponded with a lady from boston who was originally given the diagnosis of ALS, which was "re-confirmed" by 2 other neurologists. She continued to search for a neurologist who would perform muscle testing, and found Dr. Thomas Kwiatkowski at the Mass General Hosp in Boston--he is(or was) in the Neurology dept which is headed by Dr. Robert Brown, a world renowned clinical neurologist and researcher. perhaps if you called and spoke with either of these men they would be willing to help--if you can get through the wall of employees who feel it their given mission to protect the physicians from anyone who needs them (sorry--my cynicism is showing). There are also "archives" from a feature on the MDA (muscular dystrophy)web site under the heading of motor neuron disease called "ask the experts"--in which individuals could write in with a question and one of the physicians associated with the site answered whatever questions had been chosen to be published that month. one of the questions:
05/04) [4097] STATINS — COQ10
Are you aware of any research going on connecting statins and amyotrophic lateral sclerosis (ALS)? My husband's doctor mentioned current research that seems hopeful, using CoQ10 in large doses, as well as a possible connection between free radicals and ALS. A recent article on CoQ10 indicated that taking statin drugs can lower the amount of CoQ10 in the body. If CoQ10 is useful in removing free radicals and statins lower CoQ10, is it oversimplification to connect the drug and ALS, if not as a cause, but for making the disease worse? My husband's condition has been limited to muscle weakness and atrophy of one hand that began, coincidentally, when his doctor added 1200 mg of Niaspan to his Lipitor regimen. In almost two years the problem has not spread beyond the right hand.



REPLY from MDA: Hiroshi Mitsumoto, M.D., Director, The Eleanor and Lou Gehrig MDA/ALS Center, New York, N.Y.

The relationship between CoQ10 and statin is an interesting one and we have to pay attention to it. I have to admit that I did not know anything about such a chemical interaction between them. CoQ10 is lipid soluble, which may have something to do with this particular observation.

We are about to start a large multicenter study with megadoses CoQ10 in patients with ALS and we will certainly investigate this issue. I appreciate your bringing up this particular point.


ww.mdausa.org/experts/responses.cfm?id=66

you will notice if you access this site that of the last 16 questions published, 4 of them consituting 25%, ask if the statin being taken is related to their ALS. Interestingly enough, I wrote to all the physicians who responded to these specific questions in August 04--no one answered my query about the incredible "coincidence"--but the feature never resumed. It was abandoned. no explanation other than the web site was "revamped"...it could be coincidental--same as those 4 questions could be coincidental. but one would think it should at least raise a question in the physicians' minds....
You could also email Dr. Beatrice Golomb who is a neurologist/researcher at UCSD currently amassing self reported side effects of statins to perform a meta analysis of the information and publish the results. Last I corresponded with her, she mentioned ALS symptoms and diagnoses ....her email address is :
{bgolomb@ucsd.edu}

PLEASE take the time to email her--she will respond and then have one of her researchers contact you.
the reason i am interested in neurodegenerative diseases and statins--i am certain Lipitor is associated with my husband's diagnosis of Parkinson's
Best of luck to you, madelyn