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Jan 5, 2008
Learn about ALS
HI to everyone, I am new here. I have had muscle twitching, wasting what my doctor thinks is some kind of mnd and am awaiting emg studies. Sometimes I feel my illness was brought on by a medication I was taking as I was perfectly healthy but had a reaction to medication and my health has been down hill since then. I noticed on one site it says mnd can be caused by toxic drugs. Just curious to know if anyone else was taking medication before they got sick that they feel may have triggered there illness?
Hi there

Hi, Just wondered what drugs you were taking? Maybe someone will be able to answer you better. Welcome. My Best to you, Beebe
Cholesterol lowering meds are being investigated for MND and ALS progression.
mamma, do you remember what kind of medication you were taking? I just can't believe the great number of people with MND. Three years ago or less, I had not even heard of MND! Jeeeez, it seems to be getting worse every day. It is getting to the point to where MND is as common as a cold! We need a cure asap!

I was taking effexor but I had some swelling and my doctor gave me a diuretic and I had a bad reaction to it and then I got sick. Maybe just coincedence but I was always so healthy. Do you mean you hear about mnd lots because of being on here or do you know people with it. It makes you wonder all of the triggers and what they are environmental, what we ingest, the food we eat with all of the sprays and toxins. What causes it, I guess this is the million dollar question. But out of curiosity where others of family members on meds when they develpoed there illness. What scares me is drug companies do not do long term studies on a lot of drugs and can only guess what the long term effects would be. A lot of drugs they don't even know how they effect the body they just know they work, It scares me a lot!
Exactly, momma! It should scare us a lot. You see, I am from the old school generation...........I was born, and raised out in the country as a youngster. I moved to the city in my 20's. As I was growing up, I do not remember seeing so many different types of illnesses. Take for instance, this MND, I first learned of it when my son came up with it. Of course I was shocked. I knew of Lou Gherig, but I never took the time to sit down, and research his illness, until it hit home. What a way to find out about this great man's disease that claimed his life.

I have a long time old school friend that we used to hang out with back in my hey days when my boys were toddlers. We visited each other a lot, and played cards till dawn on a regular basis. We had our 2 boys, and they had their one, so they were buddies. We cut down on the visits, I should say all of 100% when the boys became pre-teens, because we got busy with them becoming teen agers. Okay the years went by, and our boys became men, but sorta lost contact, but we still called, and emailed each other, not too regular though. I did not let them know of my Rudy's illness until later. I just could not talk about it during the early stages of als, because I started bawling right away. I just wanted to talk to family only. So when my son's health started declining, and I was sort of accepting his fate, I decided to call my friends, and give them the bad news, but before I started telling her about my son, you would not believe what she told me. She told me that she was in bad health, and docs were suspecting MND, probable ALS. I almost had a heart attack. Well, you can just imagine the rest. What a coincidence! She has not being diagnoseded yet, but she is going to the same docs my son was seeing. She looks bad though. Of course she is in denial, but I don't like to tal to her about it. I just call and check on her. My friend, I hope she gets good news! God bless you all!

Hi All -

Just thought I would throw my 2 cents in. ALS has been known and described since early 1870's - long before most of our medications. But it WAS in the industrial era, thus many environmental toxins.

Given the high incidence of Gulf War vets with ALS, I am leaning toward genetic predisposition brought on by toxins.

My Pals mixed toxic chemotherapy for decades without any protection - but not every chemo nurse gets ALS. She also took Statins.

It is probably prudent to take a closer look at statins, but outside of that, I think we will find one of the causes in our environment, rather than in specific medications. Example -AL was on statins, but he also ran into a soup of toxic chemicals while fighting fires.

I emphasize one of the causes, because ALS looks incredibly multi-factorial.

I think all of us in the ALS world look to what we were exposed to in the early stages of our ALS journey - I think it is natural.

I, for one, think the answer is so elusive because the VAST majority of people exposed to the supposed causative agents never develop ALS. Even if you were exposed to a toxin how could we know YOU (or ME) specifically would get this disease.

I guess don't expend too much energy on the medication concern because it all boils down to risk/benefit - you probably needed the meds you took. In the case of statins: dozens of millions of people take them annually - but rarely does a statin user get ALS. Yet many ALS patients get the disease who have never taken a Statin.

In my ALS journey I have wondered about these things, but I think the answer will emerge in genetic research - a gene or genes that can be altered so the person no longer remains susceptible to the effects of the toxin.

Just my little take on it - but it keeps me from focusing on what I cannot change.

Take care all - Beth
Yes I agree many things can trigger. I think we just have to remember many drugs (pharmaceuticals) are chemicals, our bodies are not meant to ingest them. I also used to take wellbutrin and when you read about them they are so full of chemicals and so many people react terribly. On this site I looked at with FDA reports three people were diagnosed with nervous system disorders and many people with autoimmune disorders after ingesting this drug. I think generally in our lives we are exposed to more toxins. I just find myself wondering if I could have done something to avoid this. I'm sure I'm just going through a natural process coming to terms with being ill. Does anyone know if als cases are on the rise?
I had started a thread about the possible effects of Neurontin causing a MND. If you like do a search above for neurontin, and you will see what the drug company themselves said about thsi one drug. A copy of one of my posts is below.

God Bless
Capt AL

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, neurontin, is Pfizer and they do not know or have any idea how the drug works? They said that from their own website. You got to be kidding me.
God Bless,
Big AL:cry:
So scarey same as wellbutrin, Glaxo Smith says they do not know exactly how it effects the brain. Wellbutrin gave me muscle pain in my hands and knees the doctor I was seeing said that would not be from Wellbutirn and I stayed on it for two years. After I looked it up and muscle pain is a sign of an allergic reaction and you are supposed to get off of it asap if you have this. I stayed on it for two years only because it worked for the depression I was having. I also have memory/cognitive problems, I just can't help but think, what if I did not take this. I am twenty nine so young, I had so much more to do, we all do. I sure don't trust these drugs and drug companies, they fund there own studies. Have you heard of others that blame there illness or think it may have come from neurontin. I knew a girl who was on it it was making her legs weak. She is ok now though. How long were you on neurontin before you started with symptoms? People may think I sound paranoid but damn it something triggers these illnesses and we are just taught to trust in the medical field, trust that the drugs they give us are safe. We have to remember they are chemicals, our body is not meant for them. I realize there is need for them and I realize there was illness before these drugs came along but why is m.s on the rise, cancer? I'm not sure in mnd is. I really believe it is environmental toxins. As you can tell I have a mistrust in the pharmaceutical industry. This ritalek, it may really help people I don't know but it seems ridiculous to say it will add two months to your life, but will not slow the muscle wasting. If you ask me it sounds like b.s., correct me if I'm wrong and this is a wonder drug, but really how much money is being made of of this. Have you found others that attribute mnd to neurontin. I realize that we may have gotten ill anyways but damn it, it's our lives, our children need us, our husbands and wives need us.
Mt pockets I was looking into what you said about neurontin, since i am sick I have too much time on my hands but I found a site where they have fda reports on all sorts of drugs. Neurontin is a bad one they have it as one on the top drugs to watch for as there were over eight hundred reports and many deaths related to this drug. What I did notice is there were two reports of als after taking neurontrin reported, reports of demylination, a few reports of muscle atrophy, many of weakness and muscle twitching(these cases said weakness and twitching resolved after dicontinuing the drug). God only knows but it does make you go hhhmmmmm.
If we really knew what went on behind the closed doors of some of the prescription drug companies we would probably stop taking any drug. I was told they weight the risks of how much a drug will make in profits against the payout of possible lawsuits due to deaths. If the profits are greater they put the drug on the market and let the chips fall where they may.

I was in a pain clinic about 16 years ago for chronic low back pain and they started me on Wellbutrin. I immediately begin to have heart palpitations. After a couple of weeks my heart finally went into fibrillation. If you read the side effects guess what?

CLINICAL PHARMACOLOGY of WELLBUTRIN XL "Pharmacodynamics: Bupropion (Wellbutrin) is a relatively weak inhibitor of the neuronal uptake of norepinephrine and dopamine, and does not inhibit monoamine oxidase or the re-uptake of serotonin. While the mechanism of action of bupropion, as with other antidepressants, is unknown, " You have got to be kidding right?

Again another drug that they have no idea how it works? Yet they are quick to sale it and make loads of money.

Below is a partial list of the side effects. There are too many to list here. To see for your self go to: and look on page 20. As usual buried in the back are the most important things you need to know.
(I have tried 4 times to get this chart to come out right. If it does not come out right this time go to the site and see for yourself.)
Body System/Adverse Event
WELLBUTRIN SR 300 mg/day`WELLBUTRIN SR 400 mg/day Placebo
Palpitation 2% 6% 2%
Flushing 1% 4% —
Migraine 1% 4% 1%
Hot flashes 1% 3% 1%

Well it's good to know only 6% (6 out of 100 people) get palpitations of the heart. I noticed they did not say how many died from the heart going into fibrillation. Also my dosage was 2500 mg per day, not the 400 mg quoted in the study. I wonder what the test results would say at that level of dosage?​

I guess the cost/ risk benefit was worth it for them to almost kill me. After all how could my family prove that any particular drug led to my death?​

After I had left there I requested a copy of my medical records. Funny how there was no record of them ever having given me any Wellbutrin. But, I still had the prescription bottles to prove that they did give it to me. CYA​

As soon as I get any new medicine I go to the Internet and look up the side effects and the other medications that are not suppose to be used along with it. The Doctors are too busy sometimes to do this, and it might just save your life.

As for your question about the Neurontin. I was on it for about 10 years at 2500 mg per day and my symptoms started while on the drug around the last year.​

I hope my ranting doesn't scare everyone away from taking your needed medicines. I just get so upset thinking that I may have gotten this ALS from some drug I was prescribed and NO ONE would ever admit that, and to top if off they have no idea how it works? AMAZING!​

God Bless
Capt AL​
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Hi all,
My husband, Eric, was having some of his symptoms before taking Lipitor, but after a month on the medication in the Summer of 2006, his cramping was so bad all over his body, he took himself off the medication. After that summer, his symptoms progressed pretty quickly. We will never know if this started his downward spiral or not. In the spring of 2007, he also had a Tegretol reaction after being on the medication for a month, which landed him in the hospital. They quickly tried to say it was a tick bite, but could never come up with a blood test to back it up. I just think that they didn't want to say their original diagnosis of Tegretol, because they would have to report it and if too many reactions are reported it will come off the market. After not being able to confirm a tick bite, the infectious disease doctor called me one evening and asked if anyone had mentioned ALS to us.

Our neighbor took Lipitor the same year and had renal failure and now has to keep a close watch of his BUN and creatinine.

My father took Lipitor for many years and 2 years ago had renal failure. His cardiologist put him back on Lipitor a few months ago, but I don't think the neprhologist knows yet.

It is nice to have modern medicine to keep us alive longer than the olden days, but it is very scary too!

Good luck with all of our meds!
Pam B in Va
Yes it's scarey. I was reading how the drug companies, the fda, they work together, the fda is not the big watch dog they are supposed to be. I was reading in a New York times report that the drug companies even fund 60 percent of medical trials and that now even the medical journals that are written for doctors to learn from are tainted because these doctor's are funded by the drug companies. I think Michael Moore should do a documentary on Drug companies. I came across a report from the fda that is just recent and they are warning about a drug that is used to treat Anemia brought about from cancer treatment (chemotherapy) that they have found that cancer patients taking this drug have a higher death rate and increase in tumour growth than the patients with cancer not taking this drug. So this drug that people are given they are now saying are better off without and it actually caused death and tumour growth somehow made it through the fda and into the mouths of cancer patients is just crazy. The drug companies covered up the fact that ssri antidepressants were known to cause suicidal thoughts in youth, they hid this fact, they silenced the researcher who wanted to report this side effect. The drug companies are allowed to throw the results of there studies and no one does anything. If a drug trial is 12 months long and the last six months there are unfavorable results, they will make it a six month study and disregard the last six months of the study. There are so many dishonest tactics that are used in these drug trials and frankly it is just scarey. I realize there is a need for many medications, many do help and are life savers. Last night I was reading these reports on the drug companies from reputable resources, globe and mail, new york times etc. My opinion is that I can no longer trust in these pharmaceuticals and trust they are safe. It may not have caused any one of our illnesses but this system that introduces and tests our drugs is dishonest and corrupt. The government really needs to take measures to ensure that the medications we are taking are safe. There is my two bits. Oh and Mt pockets, you must be one tough cookie, you survived a plane crash? Now there is another issue, trauma to the body that may cause these illnesses. Who knows, if we knew the answer maybe we would all be better and we could all get together on a beach in mexico and celebrate while drinking some stiff drinks with nice little umbrellas!But for now we'll just take it one day at a time and be thankful for today!
Oh yes Mt Pockets about the Wellbutrin, it says 6 percent get heart palipitaions but who knows if that's a correct number. It says that 1 in ten thousand people have rectal complaints but my husband took it for quiting smoking (zyban) which is the same product only marketed under a different name for smoking cessation. We both had the same issue, I won't get into details with the bum department. So I guess we were 2 in twenty thousand people that this happens to. The scariest thing with my husband was that he has never sleep walked before but on this drug he woke up two times in the middle of the night and drove to work not even aware it was dark out, not noticing the time in the house or the car, snapping out of it when he drove all of the way to work and the doors were locked besause it was 2 or three in the morning. It just scares me that a lot of illnesses are said to stem from evironmental toxins, but what about the toxins we ingest into our own bodies. My sister has psoriasis and her doctor wanted to put her on a drug I can't remember the name of it, you see commercials on t.v. for it and on the commercial it even says may cause nervous system diorders. When my sister researched more into it on the internet she found that the reports said that people who were taking this drug were developing m.s. at higher numbers than the regular population. She decided she'd rather live with the psoriasis then take a chance developing m.s. because of a drug. My point of view is if by the own drug companies admission this drug causes m.s. to develope in people taking it how do they know other drugs could not do the same when they don't really know how they work in the body. My sister ended up going to a naturopath ( I realize lots are quacks and out for your money) but this guy did blood work pin pointed her food allergies and within a month her psoriasis that had been so terrible her whole life was gone. The company for the drug for psoriasis claimes that it is an auto immune disorder but my sister's was a food allergy. I just wish these companies would put there billions of dollars into cures insteadof coming up with bandaid drugs to treat the symptoms and not the root cause, cures are not profitable enough i guess.
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