Copaxone and Tremors

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Copaxone and Tremors

Postby Misdiagnosed » Tue May 27, 2008 1:42 pm

I was misdiagnosed with multiple sclerosis instead of the correct diagnosis of brainstem stroke. I had been on Copaxone for the four years of my misdiagnosis. About the fifth day of taking Copaxone, I developed a almost constant head tremor. (Dystonic No-No) It appeared as if I was shivering or repetitively shaking my head no very quickly. My quack neuro said that it was a symptom of my MS. I tried a variety of meds and used Botox injections in my neck every 4 months with some improvement.

I have been off Copaxone for 8 weeks now and my head tremor is GONE. I mean not even. I am amazed. It has been so embarrassing and fatiguing these past four years. I also now have a regular menstrual period which I didn't for the years I was medicated.

Does anyone have any information about Copaxone and Tremors. I see from the pharmacy website, that tremor is a rare side effect. But a severe disabling tremor??? Please respond if you have any information on possible harm done taking copaxone when a person does not have MS.

I am in shock....
Last edited by Misdiagnosed on Thu Nov 27, 2008 11:45 am, edited 1 time in total.
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Postby Jamie » Wed May 28, 2008 6:56 am

Wow.

I can only imagine what you are feeling now.

First shock, then I imagine, uncontrollable rage.
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Copaxone poison

Postby Misdiagnosed » Wed Nov 26, 2008 10:19 pm

Hello,

Im back and I just want to say that after being off the Copaxone poison eight months I feel like and I actually do....have a new life.

Long story I was diagnosed with definite Multiple Sclerosis five years ago after a couple days of dizziness which morphed into vertigo, nausea, diploma confusion and an inability to walk. MRI found an area of demylenation near my brain stem and two tiny t flares. Spinal neg for bands but high basic protein. Thin, white, 40 yo female from Pacific northwest..( all strong signs of MS).

I started copaxone one month later when I reported to neuro that my left side of my body was numb. He said that this was my second relapse thus I started Copaxone. Went to second opinion, second neuro said probable ms, keep up the shots.

Basically I was sick as hell in bed for 6 months. 5 days after starting the Copaxone I began the constant dystonic head tremors during all waking hours. Neuro said it was another exasperation;absolutely MS, you just got hit hard....... In the 4 years I was on copaxone I never had another brain lesion, my original lesion disappeared so neuro said that the copaxone was working. stayed in bed for 12 hours a day except yoga and doctors...


Jump forward to my above post which explained that I was misdiagnosed for 4.5 years. Dr. Michael Olek diagnosed me as having had a brainstem stroke. I am off the drugs and my tremor almost gone, my fatigue is better, I dont feel depressed, emotional and sick all day. I CAN DRIVE...I am healthy. I am taking classes to go back to work.

Teva (makers of Copaxone) told me no other patient has ever reported tremors ....but hey did they ever tell us about the LIPO scars in the literature??? And that no studies had been done on the effects of Copaxone on non-ms people. WT@?


I TRUELY believe that the pharmaceutical companies are running all studies and influencing all published literature about this disease.


Here is what I know..... EVERY study on copaxone but one, of the probably 100 articles that I have read is sponsored or funded directly or INDIRECTLY by drug companies or doctors funded by them. Even the National MS society receives millions from this drug company. This is understandable because Joe Neurologist at University Brain and his fellow scientist lack independent millions to create drugs.

Look at the research sources, the doctors who publish the studies, look at the stock information and you will see that the MS drugs are big big money for investors. The only independent study I found said basically all CRAB have the same slowing of progression rate which incidentally is the same rate they found in the PLACEBO!!!!!! 30% These drugs are better than nothing but they are not that good folks.

My neuro gave me copaxone after a clinically Isolated attack based on the latest gold standard for MS diagnostic criteria... 2005 Mc Donald Criteria. But guess who created and modified this criteria? DRUG COMPANIES, who now says the earlier you start disease modifying drugs the better. Remember when the study came out trying to find the benefits of double Copaxone dosages...??? Original Neuro probably ruled out stroke when I didn't die.

I have APS (Antiphospholipid syndrome or Hughes syndrome) my blood colagulates more easily than normal thus the stroke, tingling, leg dragging, mental confusion, fatique, weakness, brain lesions, optic issues.

Please note my original blood test for this disease was negative because the protein for APS fluctuates you have to have few blood test every 12 weeks to really rule APS out because one blood test can be negative and you may still have APS... APS has only been diagnosed for the past 20 years and MANY Doctors dont know much about it. APS also causes ALL the symptoms of MS, but with the addition of miscarrages, TIAs and strokes. Please for the love of all things sacred...(Tommy Boy)

research APS and get tested often. I am off the Copaxone poison, tremor meds, provigil but sadly I do have to take.........a baby aspirin once a day...... I know there are other APS misdiagnosis out there. Some doctors in the UK believe that up to a third of all MS is really APS. I hope I help someone. Heather

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Postby patientx » Thu Nov 27, 2008 9:18 am

Misdiagnosed:

What prompted the doctor to find the new diagnosis?
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Postby Misdiagnosed » Thu Nov 27, 2008 11:20 am

I left the original neurologist whom I had been with for the first 4 years because his billing lady was a nut job and my billing was always messed up. I found out through a friend that this big deal MS doctor had moved to town and I had insurance so I just made an appointment. This doctor is Montel William's MS doctor --Dr. Michael OLEK. google him... He actually listened carefully to me, which is a challenge because the tremor impeded my speech, and said he would like to do some tests. I had a VEP, massive blood tests, MRI and I gave him all my original medical reports. (I am meticulously organized) My Original Neuro never did a E. Potential test and the only blood tests I had were the first day before I had the stroke. (Copaxone doesnt require blood test monitoring... like the other CRABs to check liver)

10 days later he said, "You don't have MS, you had a stroke" He referred me to a rheumatoid expert for more tests and a then met with Olek again for blood work and this all comfirmed the Hughes syndrome diagnosis. Olek then sent me to stroke rehab and speech pathalogy, but as the weeks past, the therapists were in shock at the fact that my tremor was lessening and lessening and my speech was clear. It was the Copaxone withdrawal that changed my life.


I wish I had the 4.5 years back but I realize this is life and I am living today___Thanksgiving 2008--- very very thankful that DR. OLEK cared enough to really investigate when it would have been just as easy to say, "looks good see you in 3 months...."
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Postby patientx » Fri Nov 28, 2008 7:36 pm

Thanks for the reply. What exactly caused Dr. Olek to conclude that you had a stroke?
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Postby Misdiagnosed » Sat Nov 29, 2008 12:00 am

Original Neuro only tested my blood once in five years. Which was during our first meeting in the emergency room when I first presented five years ago.

Dr. Olek performed blood tests every six weeks to evaluate Hughes syndrome and he also had me undergo an eye exam and Evoked Potential exam to evaluate my brain activity. As I wrote before the blood testing for APS fluctuates throughout your life. You have to score positive on consecutive testing, have had a vascular episode or series of miscarriages to be positive for APS. I met the criteria perfectly.
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Copaxone is no better than placebo

Postby Misdiagnosed » Thu Dec 04, 2008 12:51 am

2004 Copied from Lancet Neurology of Canada

In this week's issue of the Lancet Neurology, glatiramer acetate, known as Copaxone(R), was subjected to an independent review. The systematic review, called a Cochrane Review, performed by Dr. Luca Munari and colleagues, challenges the claims of benefit from previous industry- based publications.

A convincing benefit on disability and an effect on the proportion of patients free from acute flare-ups of the disease during treatment could not be demonstrated, "Glatiramer acetate is now routinely prescribed for MS and it is the fastest-growing product in its market. However our systematic review of all randomized controlled trials of glatiramer acetate found little support for use of the drug in patients with MS," notes Dr. Luca Munari of Italy's Azienda Ospedaliera Niguarda Ca' Granda.

These efficacy-challenging observations might come as a surprise for many Copaxone users. Most Canadian MS patients and prescribers are unaware of these early concerns about Copaxone's efficacy even though the FDA, the U.S. government agency which reviewed the product license application in 1996, was concerned about "data dredging" in the sponsor's own data analysis. The agency conceded then that the treatment had a very slim treatment effect, but approved the drug.

Cochrane Reviews are now being applied to the new drugs being used to treat multiple sclerosis. Given that Canadian neurologists prescribed $150 million worth of these new treatments last year, it is imperative that those without a financial stake scrutinize treatment claims.

"Canadian health care dollars are precious. We must continue to scrutinize treatment claims from the pharmaceutical industry and continue to design clinical studies, which improve upon from the missteps of previous studies," says Dr. George Rice, Neurologist and Director of the MS Clinic at London Health Sciences Hospital in London, Ontario. The Cochrane Collaboration attempts to distill a true sense of worth from all published and unpublished clinical trials of a given agent or intervention, despite industry claims. The approach is simply to obtain all published observations, to adjudicate trial methodology and quality and to perform statistical analyses of aggregate outcomes. The Cochrane organization is not-for-profit and is designed to provide realistic expectations of what drugs might do, for patients, prescribers and payers. Application of rigid methodology in Cochrane views generally leads to more sobering interpretation of treatment claims.

Beta-Interferons are widely used in the treatment of early, relapsing forms of multiple sclerosis. The Cochrane Collaboration scrutinized these clinical trials in a publication in Lancet last year. A consistent benefit on attacks and disability progression was identified for two years for which data were available. Concerns were raised about the relatively short duration of clinical experimentation justifying use of this kind of treatment in a disease, which is 40 or 50 years for most patients. Concerns were also raised about methodological problems across most of the studies reviewed, particularly the application of rigid intention to treat analyses.
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My story

Postby Misdiagnosed » Sun Jan 11, 2009 12:11 pm

Misdiagnosed: Why Spokane's infamously high MS rates may be nothing more than a self-fulfilling myth. by Nicholas Deshais, Inland NW News
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Help

Postby farra » Thu May 28, 2009 11:20 am

A little over 2 years ago I had an optic neuritis and was sent for an MRI. I did have lesions in my white matter on the scan although none of them were active. I did a round of IV solumedrol and the eye improved. I was sent to a neurologist who ordered several test, including a lumbar puncture. The original lab results reported that I had no oligoclonal bands. About 3 weeks later I was contacted by the doctor who told me that the lab had made a clerical error and that I had muliple bands. The same day I was started on Copaxone. Note.. At the time I was symptom free. Well over the last two years I have had a varitey of vague things including right sided weakness, strange pains, fatigue, and mood swings. I have also had at least 4 very harsh shot reactions. I have notifed my doctor of everything and of course he still wants me to take the shots. I had another MRI a year ago and my doctor told me that I had no new lesions and that one had actually decreased in size. Well after multiple phone calls to his office( due to I feel like Im being poisoned) I requested my records. His dictation stated that I had 2 new lesions, but get this... The radiology report I had to get from the hospital did note the lesions but to my suprise I have a small angioma in my high left parietal lobe. I guess I did not need to know that?? I am going to have my tests including the lumbar puncture repeated because I'm pretty sure I felt better before I started the Copaoxone. I am wondering if anyone can tell me what can happen to me if I stop taking the shots.
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Re: Help

Postby NHE » Thu May 28, 2009 1:13 pm

farra wrote:I had another MRI a year ago and my doctor told me that I had no new lesions and that one had actually decreased in size. Well after multiple phone calls to his office( due to I feel like Im being poisoned) I requested my records. His dictation stated that I had 2 new lesions, but get this... The radiology report I had to get from the hospital did note the lesions but to my suprise I have a small angioma in my high left parietal lobe. I guess I did not need to know that??


For whatever reason, there seems to be serious communication problems between you and your doctor. If this were me, I would recommend seeing a different doctor.

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