ALS-like symptoms from Vytorin

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

ALS-like symptoms from Vytorin

Postby carbuff » Thu Jan 12, 2006 2:54 pm

Posted: Thu Jan 12, 2006 2:42 pm Post subject: ALS-like symptoms from Vytorin

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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.
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Twitching

Postby carbuff » Tue Jan 31, 2006 11:13 am

Has anyone experienced extreme muscle twitching?

My mom's middle and ring finger were twitching very badly yesterday. Enough to where her finger would be completely bending.

Anyone ever have anything similar to this?
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Reply for "carbuff"

Postby sos_group_owner » Wed Feb 01, 2006 12:33 am

Hi Carbuff,

Have your Mom's doctors checked for muscle damage?
CK (Creatine kinase) or CPK is usually the first test.
If that comes back negative, her Dr's should do a muscle biopsy.
Dr. Paul Phillips (Director Interventional Cardiology) of Scripps Mercy
Hospital, San Diego, CA, is the expert on statin associated muscle
damage and what to look for when doing a biopsy.

Dr Phillips website: impostertrial.com

Below is some of Dr Phillips's research:

Quote from "Annals of Internal Medicine" article:
"Muscle biopsies showed evidence of mitochondrial dysfunction,
including abnormally increased lipid stores, fibers that did not stain
for cytochrome oxidase activity, and ragged red fibers. These findings
reversed in the three patients who had repeated biopsy when they were
not receiving statins. Creatine kinase levels were normal in all four
patients despite the presence of significant myopathy."

ww.annals.org/cgi/content/abstract/137/7/581

15 years is a long time to take statins, and side effects can occur at
anytime. With long time statin use it is not uncommon for side effects
to occur when the dose is increased or the patient is switched from one
statin to another. Vytorin is 2 drugs: Zocor (statin) and Zetia.

Your Mom is most likely very deficient in CoQ10 (coenzyme Q10 - ubiquinone).

Please read these articles by Dr Graveline:
"Multiple Sclerosis, Amyotorphic Lateral Sclerosis, Parkinsonism and
Alzheimers Disease with Statin Drug Use."
http://www.spacedoc.net/neurodegenerati ... tatins.htm

"Statin Alternatives" (beneficial nutritional supplements)
http://www.spacedoc.net/statin_alternatives.htm

"Women and Statins" (no proof that statins benefit women)
http://www.spacedoc.net/women_statins.htm

Fran
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Postby jet500 » Tue Mar 21, 2006 9:06 pm

I have also had a preliminay diagnosis of ALS. I am a 57 year old male and have been on Simvistatin (Zocor) for 12+ years at 60mg a day.

My health care provider is the Veterans Administration. I am a medically retired pilot.

Last Thanksgiving I thought at first I had had a stroke but over time I realised that this was no stroke as muscle weakness and movement were getting worse. A CT scan ruled out stroke so they sent me to a neurologist and he has made the preliminary diagnosis.

I have an MRI, EMG and Nerve volocity test comming up.

I have stopped taking Zocor (gradually) and it seems that symptoms have leveled off. Maybe wishfull thinking but they are deffinately not progressing at the rate they were.

I am not getting any better at this time but not getting worse as far as I can see.

The V.A. treats vets very aggresively and also had me on Metformin for boarderline diabetees. My blood sugar was within National guidelines but not the V.A.s. Without Zocor it seems my blood sugar is within thier guidelines now without meds. Go figure.
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Postby carbuffmom » Wed Mar 22, 2006 10:45 am

Hi Jet:

I am the 48 year old woman that Carbuff has been talking about. I have been on various statin drugs for 13 years. I have been on Zocor the most. About 2 years ago, the Dr. put me on Zocor and Zetia 20/10 mg. After a while, I started getting muscle cramps in my hands, legs, neck, and abdomen. I complained to the Dr. about it but he said to try and tolerate it because my numbers were so good. About a year ago, he switched me to vytorin. After about a month or two, I noticed that my hands were getting weak---I had difficulty with buttons and zippers and tying. Upon starting the Vytorin, I also started a vigorous exercise routine of running 4 miles 3 to 4 times a week and doing a boot camp routine. I then I noticed I had trouble doing lateral lifts with my right arm.
I thought I had a weight lifting injury and then I thought I had carpal tunnel.

Went to see my Dr. who noticed I had muscle atrophy between my thumb and index finger on my right hand. Thank God I'm lefthanded. He sent me to a neurologist who did all the tests, MRI, EMG, nerve, etc. After the EMG, I started twitching all over. I couldn't even sleep. My mom suggested maybe I was having side effects from Vytorin, so I called my Dr. who said to stop taking it and see what happens. I stopped cold turkey. I would never recommend this. I had withdrawl symptoms of weakness, dizziness, vision problems, and twitching. I think you need to taper off gradually.

The neuro said I was probably in the early stages of ALS. The emg caused me to have a lot of twitching for 6-8 weeks. When I asked the neuro about it, he said that I was twitching before the test. I would have occasional twitches before but nothing like after that test. I ran 4 miles the morning of the test. I wonder if that could have contributed to the problem. Has anyone ever had twitching after the EMG?

I have been off statins for about 4 mos now. I haven't gotten any worse for which I am grateful. Whenever I overdo physically, I pay for it. I no longer run---I do moderate walking and have given up weight lifting as it seems to cause weakness and twitching. I have been taking CoQ10 (1500 mg.) upon the advice of Dr. Graveline. I also take supplements recommended by Jonathan Campbell and his NATURAL STRATEGIES FOR RECOVERY FROM STATIN DRUGS. (www.cqs.com). I have good days and bad days and try to keep a positive attitude. It's hard sometimes.

On my last visit to the neuro, he was surprised at how strong I still am. He still thinks I am in the early stages of ALS but then added that he wouldn't "bet the farm on it". This comment gave me hope. He encouraged me to continue with my vitamins and supplements. I am also thankful to have discovered that ALS symptoms and statin toxicity are related.

I have another EMG and neuro visit at U of MI Hospital scheduled in May.
I am very apprehensive about the emg.

I hope your tests go well. Keep me posted. You are in my prayers.

Carbuffmom
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Reply for "Gerry"

Postby sos_group_owner » Mon May 08, 2006 11:59 pm

Hi Gerry,

It would be very beneficial if you would share your advice with the forum.

Fran
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Statin and ALS

Postby thx » Mon May 29, 2006 6:37 pm

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
"
--- by ---
Peter Langsjoen, M.D.
**********************************************
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)
******************************************

"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."
--- by ---
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.
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Postby carbuffmom » Tue May 30, 2006 8:20 am

thx:

Thanks for all of your info. I have been in contact with Dr. Golomb. She is doing a study on statins, including ALS like symptoms. I have filled out all of her paperwork.

I am still doing quite well so far. I have not worsened since I have stopped the statins. I believe a lot of my symptoms were exacerbated by the EMG and Nerve Velocity Test. I refuse to have another, much to the dismay of my neurologist.

I don't need another doctor to tell me that I have ALS. I already know that. I prefer to think of it as statin toxicity as it gives me hope that I will recover. If I do worsen, I will seek more medical help.

I am contemplating a trip to see Dr. Golomb since she appears to be the only doctor with the knowledge that I am seeking.

I am very sorry about your father. My best to you and your family.

Sincerely, Debbie
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Postby thx » Tue May 30, 2006 12:30 pm

Debbie,

I am glad that you are contacting Dr. Golomb. As far as I know she seems to be the only doctor who has conducted a large-scale survey on the statin drug's side effects.

I would like to recommend Dr. Peter H. Langsjoen, who is an cardiologist specializing in statin-induced side effects and recovery. I have had a couple of email exchanges with him. He seems to be very kind, knowledgeable and honest in telling me what's known and not known.

Based on my father's experience, it seems harmful to exercise beyond one's comfort level. He exercised a lot during some therapy sessions but it seemed to have expedited his illness. Just something to share with you. It's better to confirm your doctors for more authoritative opinion.

In addition to this forum, you may find some information on statin side effects and ALS in these yahoo groups:

Stopped_Our_Statins
SupplementsForAHealthyHeart
TakingLipitorAndHateIt
ALS-discuss
living-with-als

I met some warm-hearted people on those groups for more information on statin drugs and doctors. Some of those groups may not be active though.
They can be found from this yahoo group URL: groups.yahoo.com/

thx
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als like symptoms with Lipitor

Postby catzntrees » Thu Jul 27, 2006 10:42 am

I am a south Florida female, now 61, who started taking 10 mg daily Lipitor in 2000, when aged 55, for high cholesterol. I was reluctant to start on it as I read there could be serious side effects, but I have a family history of heart disease and was unable to lower my lipids through diet alone. I monitored my blood enzymes very carefully for the first year.
Lipitor worked. My cholesterol dropped from 270 to 207 and stayed there for 5 years.
I felt no different and became lulled into a false sense of security. Even said how great it was and that my allergies (to yeasts and molds) seemed better. I bought some shares in Pfizer because of their "wonder" drugs Lipitor and Viagra.
July 2005 I began to lose the use of my right thumb and it became swollen and bent over -- trigger thumb. I assumed it was arthritis, but it wasnt painful, so I didn't do much about it, having lost my health insurance in 2003.
Then I began feeling unsteady in the mornings about an hour after I took my 10 mg. Lipitor, so started taking it at bedtime, instead. Also began taking CoQ10 along with it.
I tried acupuncture for my thumb in January 2006, but 6 sessions didn't help.
By now I was feeling oddly foggy, mentally, but was under a lot of stress at home, so discounted it. I became clumsy, dropping things and stumbling. Had a bad fall in February and injured my left knee so started wearing a knee brace.
As the left leg got better I realized I was also limping on the right leg. Soon I had to use a cane to get about and needed to use my arms to get up out of a chair. I was slurring my words. I sounded drunk and was tired all the time. I couldn't turn keys or door handles. Needed to take an afternoon nap. Emotions were near the surface. I would burst into tears over a newspaper cartoon.
Before long I was so weak I could only stagger around my house by hanging onto the furniture. Still no pain whatsoever (apart from horrible nightime cramps throughout my whole body) just increasing muscle weakness and being in a constant daze. I was having difficulty swallowing and often aspirated bits of food. I began worrying about having MS or ALS, or having had a stroke, so made an appt to see my doctor. Suddenly the possibility of it being the Lipitor dawned on me at last and I stopped taking it the first week of April 2006. (I now know I should have eased myself off it in case of sticky platelet rebound.)
Within a week of stopping the Lipitor I felt so much better and brighter. By the time my doc's appt came around in May my mental fog was lifting and I was walking a bit better, but dragging my right foot. My right calf was wasting like my thumb muscle had. My doc diagnosed a dropped right foot and my right hand as a claw hand and referred me to a neurologist. She also told me it was possible I might have a brain tumor, so sent me for a brain MRI, which was negative, and a chest X-Ray which showed a compression fracture in my spine, probably from osteopenia.
I had for years been waking at 5am every morning to urinate, plus having embarrassing urge incontinence during the day. Within two weeks of stopping Lipitor I was sleeping through till 7am and having no problems during the day. Bladder muscles must be able to regain their strength quickly. I also noticed that the dry mouth that for years had plagued me was gone. Instead of constantly chewing gum and carrying bottled water I have regained a normal saliva flow, something I had completely forgotten ever having. The muscle cramps completely stopped, and also the awful nightmares I'd had for years.
Two months later I seemed to reach a plateau in improving, so decided to see the neurologist in July 2006. He dismissed my theory that it was Lipitor, saying he'd never such seen such side effects. (What rock has he been living under? It's well documented.)
I then wasted $1000 on two MRIs of my spine. The neurologist thinks it's probably ALS. He observed some muscle twitches and has referred me to a specialist in Miami. I haven't made an appointment as I am convinced it was the Lipitor and hope no permanent damage has been done and that I will eventually regain muscle mass and strength.
Lipitor is a poison derived from a toxic mold -- red yeast rice. And though it may be safe for some, I believe there are many people suffering needlessly from taking it and the other statin drugs.
I was lucky enough to have a home pc and research ability enough to discover what's going on, but what about all the old folk and working moms and dads taking Lipitor who don't have the time, ability or resources to do this? They are alone in their Lipitor fog, stumbling and slurring, many being diagnosed with dementia and neuropathies, having no idea that their medication is causing such horrible side effects.
Yes, my cholesterol shot back upto 240 without Lipitor, but I am now on an organic, glutamine -free diet, mainly vegetables, fish and fruit, oatmeal every day, CoQ10 Omega 3 and lots of vitamin C and hoping to keep it somewhat under control.
If it stays high, there are worse things that can happen. Statins have been around a decade at least, but heart disease figures are unchanged.
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Recovery

Postby thx » Thu Jul 27, 2006 1:49 pm

hi catzntrees,

I am sorry to hear the bad experience you had with Lipidor. Statin-induced neuro and muscle damages are very similar to that from the ALS, so only an expert with expertise on both fields can distinguish the two.

As for recovery, other than seeing the right expert, I would recommend practising Taichi. It's not only a martial art, but more importantly a way of improving one's health. Its movements are very gentle thus suitable for the elderly. Best luck with your recovery.
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Calf muscle wastage

Postby Ray Holder » Fri Jul 28, 2006 5:51 am

Hi catzntrees
I see you have or had calf muscle wastage when on statins, is this stilll present? if so have you considered taking some Carnitine, it will most probably help and, as in my case, build the muscle back up in a month or two.
Ray
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Postby carbuffmom » Fri Jul 28, 2006 9:23 am

Hi all:

Thanks for the tip on Tai Chi. I have ordered a DVD about it. Hopefully, it will be just what I need.

I am still plagued with arm and hand weakness. Some days are worse than others. We have been moving into a new house which, of course, has added to the weakness and fatigue. The twitching is still there, though not as bad. It does get worse after physical exercise.

I pray each day that I will not get worse and prove the doctors wrong. It's just hard living with the fact that I may have ALS. I can sympathize with you all.

I wonder how many people have had the same problem? I am afraid to seek more medical help unless I get worse. I told my neuro that I preferred to think that I suffer from Statin Toxicity rather than ALS as it gives me hope. A good mental attitude can help. My neuro backed right off and said "okay". He says that I am stable right now and that I can call on him anytime, but he still thinks it's ALS.

I saw my family doctor last week and he said to keep doing what I'm doing. So, that's all we can do.......

My best to you all and my thanks for the info and support.

May there be better days ahead for all of us.

Debbie
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Postby Darrell » Sat Jul 29, 2006 8:59 pm

"Statins have been around a decade at least, but heart disease figures are unchanged."
That's an interesting observation, catzntrees.
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Postby carbuffmom » Mon Jul 31, 2006 8:17 am

Has anyone ever tried or know anything about glyconutrients? Are they beneficial in any way? Would they be worth a try? Any info would be greatly appreciated. Thanks.
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A little hope that I share . . .

Postby GWardMD11 » Sun Apr 15, 2007 9:11 pm

Carbuffmom and others... Ok I have moved and my phone number and email addess is not the same as listed earlier on this forum but I will tell you what I know (at least what I can in this short posting).

As for the military member... we both could be suffering from GWI and you know what those initials mean. OR, it could be the statins (of which I am now more certain). I've dealt with this problem for over four years now. I'm almost symptom free now, and no CARBUFFMOM, you most likely do not have ALS--stop worrying. You've taken some great first steps it sounds like, but need to continue on your journey.

I would advise to all of you that you get a book called "Natural Cures". This should be the bible for us to live by (although some of the things the author states are a little impractical, most of his writings are 'spot on'). There also is a follow-on book to this one "Natural Cures Revealed" of which I have not read yet.

Ok, more onward... Yes, COQ-10 might help some, but what I have found that has really worked is glyconutrients! You can look this up. I use a Mannatech product, but there are others out there available. I've been in direct communication with 'Doc' about what this product has so far done for me, and it does have some remarkable healing properties. Anyway, if you go this route... you'll need to double or triple the normal dosages, and you can email directly and I'll let you know what I have taken that has worked for my neuropathy in the past few months. I'm no doctor, but have become VERY educated on these statin drugs and can only share my testimony and that I've heard from others. Anyway if you take these statin drugs for any length of time (normally years), eventually it passes somehow through the blood brain barrier and lowers the cholestrol level in the brain. The mylen sheath is exposed because of this lowering level, and memory functions are also sometimes impaired. Make no mistake that the brain needs cholestrol and it's the vital nutrient of the brain. Taking it away is like draining the water out of a bath and then getting in. It's also kindred to a sparkplug in your car misfiring (results) and the signals sent throughout the body are, well, just plain screwed up.

Most people that I have talked with have the most profound effects in their feet (such as my case), but twitching and other reflexes can also be affected. Additionally (in my case) my fingers used to curl up into the palm of my hand (uncommanded) and I had a very hard time walking and every step I took I was in constant pain. Well, most all of my symptoms have subsided and I feel better than I have in years!!
Eating right, vitamin (and more importantly - mineral) supplements, flushing toxins out (explained in the book I mentioned) and glyconutrient treatments have done the trick for me!

I still have an ongoing lawsuit with Pfizer for the pain and suffering caused by there brand of statin and the neuropathy it caused for so many years. I'm not talking only the muscle pain (which I also used to have on the top of my forearms of all things...) but pain that is caused by my nervous system being out of wack for all that time.

For the military member, my recommendation if your condition was caused by either the squalene oil in the shots we took during the mobility lines, little yellow pill that no one can pronounce taken everyday, or diet soda that turned to methanol (aspartame) and mixed with the metal - alum. when heated in Saudi on the ramp to 100 deg., then the treatment to get back to normal is the same as I've mentioned above, but I bet that it is none of those things and actually was caused by this drug (or at least aggravated the already existing condition).

The processed foods, drugs (like statins), sodas, and other toxins are literally making us sicker and sicker in this nation. Of course that is good for some industries and doctors I suppose, but not good for us.

Good luck in your quest for health and please call or email me as you wish and I'll share what I know and what I've found to work for myself and others. Let's all get on the road to healthier bodies.
Sorry for all the misspelling.

- Gerry -
49 year old male
(703)945-2093
GWardMD11@comcast.net
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Re: A little hope that I share . . .

Postby poohhel » Mon Apr 16, 2007 11:34 am

Gerry- I was only on the statins 16 months and noticed the same effects as what you had described...not only in my feet and legs, but in my hands and forearms. At times it gets so bad I can not write or hold my hair brush. Walking for more than 10 minutes is almost impossible . . . It used to be that I could stop doing whatever I was doing and the pain would subside but now it does not matter the pain is a constant; at rest it is subdued a bit but the cramping and lightening bolt streaks of pain remain and at play (what little I can do) the pain is almost unbareable and I often just want to cry. Right now, from my EMG and NVC test, my doctor says "pinched nerve". . . I go for c-spine and L-spine results this Thursday... so we shall see....

Best wishes to you for your continued healing, please do keep us informed on any new information you believe worthy of sharing. This forum has been a life saver.
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