Ataxia symptoms and conditions

Allow me to introduce myself, I am Christopher Wunsch. I was a practicing Critical Care RN for 13 years active practice, until September 2002, the onset of my disability at age 34.
Until Sept 2002, I had been a healthy adult with very few medical problems. I had elevated cholesterol since I was in college that I know of, and I had always chosen to eat right and exercise regularly. which had no appreciable impact on my cholesterol.
In 1999, my father had bypass surgery at age 58, and it was decided that I be started on statin therapy, and I was started on 10 mg QD, which I tolerated well until September 2002, when I began to have terrible unrelenting headaches, disorientation and confusion. I would sleep for 14-18 hours per day, therefore I missed a lot of work over these 4-6 weeks. I had a CT scan done at a local hospital, despite my persistent request for an MRI scan. The CT scan was normal. After the 3rd visit to our local ED, I was discharged home with a diagnosis of a probable Migraine Variant, and was given Imitrex, which I could not even figure out how to give to myself. I called my PCP at home after we were sent home, and I requested he order an MRI scan for me, which he agreed to and was done the following day. revealing multiple scattered lesions throughout the grey matter of my brain. When my PCP received these results, he referred me to a Neurologist who diagnosed me with a migraine Variant. My wife and I sought a second opinion from the University Hospital and Clinics in Madison, where I was evaluated by a Neurologist who specialized in MS. When I was evaluated by him in the clinic, he did not think what I had was MS at all, he did not know for sure what I had, but was quite sure it was not any form of MS. I was sent home, to be rechecked in a few weeks.
Over the course of the next few weeks, my symptoms of Headaches, Lethargy, Fatigue, and confusion had worsened, only now it was accompanied by Ataxia and slurred speech. My wife called to UW Madison and spoke with my Neurologist who informed her that I should be re-evaluated as soon as possible. We dropped off our 2 year old son at my parents and headed to UW Madison to be seen again. When we arrived, I was given a mini neurological exam, which I failed terribly, and I was admitted. I was hospitalized for 28 days, I underwent a brain Biopsy, which revealed multiple areas of vacuolization, mitochondrial changes under electron microscopy revealed thickened disarrayed cristae, inclusions of lysosomal and autophagic vacuoles.
The Differential diagnosis from the Brain Biopsy was a new Variant CJD, a Mitochondrial Disorder such as MELAS, and a few others. My muscle biopsy done at this time, was suggestive of a Mitochondrial Disorder such as MELAS or MERRF. I was started on a Mitochondrial cocktail, which consisted of 12-14 Vitamins, amino Acids and Ubiquinone. I was scheduled to transfer to a nursing home, pending bed placement. When one of the residents suggested increasing my CoQ10 dose, which was done, now 150 mg BID.
Over the next few days, I began to become more alert, less confused, and less ataxic.
I was discharged home with aggressive Physical, Occupational and Speech therapies which continued for approximately 15 weeks. After several months of rehabilitation, I tried to go back to work as a Workers Compensation Case Manager, and after a few weeks of trying to do this, I was approached by my boss, who informed me that what I used to do in a couple of hours, was now taking several days, and was inconsistent with employment, and suggested I return to Disability, which I reluctantly did. A few months later, I had neuro psychiatric testing done, which revealed cognitive slowing and other issues consistent with significant frontal lobe pathology. After this occurred, I saw Dr. Beatrice Golomb on Good Morning America one morning, talking about a Statin Effects Study she was going to be doing, I never thought for one minute, that my Lipitor use could have had anything to do with this illness and disability, but I enrolled. After about 1 year in this study, I was informed by Dr. Golomb, that "Lipitor was the likely causal contributor to my diagnosis of MELAS, as well as the holes in my brain as evidenced on my Brain Biopsy.
I havd done probably thousands of hours of research into this, and I have found that most Doctors do not nor will not listen to your opinion no matter how much proof you have, nor how many studies you have found that prove your case. It is going to be a lifelong battle for me, but for each person I can get to not believe the lie that cholesterol causes heart disease, and convince them not to take a Pharmaceutical, thats just one step in the right direction.

My side effect has been a life changing exoerience. In October 2002, after being On lipitor for nearly 4 years, I developed lesions on my brain, extreme confusion, Lethargy, Ataxia, Apraxia. I was hospitalized for 28 days at the University of WI, Madison, and was about 1 week away from being transferred to a nursing home. My working Diagnois was MELAS, Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like Episodes, as evidenced on my brain and muscle biopsies, as well as serial lab tests which revealed Lactic Acidosis.. The only know treatment is a palliative one, which is called a mitochondrial cocktail. About 10 Vitamins and Amino Acids an twice daily. Included in this cocktail is Ubiquinone, also known as Coenzyme Q10, which the synthesis of this essential nutrient is so conveniently inhibited by Statin Drugs. The result f CoQ10 deficciency may include Neuronal Apoptosis (brain Cell death, which is what was demonstrated on my brain biopsy. Dr. Beatrice Golomb MD,PhD, principal investigator in the UCSD Statin Effects study has opined that "Lipitor was the likely causal Contributor to my illness and resultant disability". My primary Doctor still wants me to resume statin use, I told him I will take my chances with heart disease, rather than to die from whatever this thing is in my brain.
It has been 4 and 1/2 years now, I still suffer from extreme fatigue, Myoclonus in both my legss, and bilateral leg pain and weakness
Please let me know of any Legal Recourse I can join as I am completely disgusted with BIG PHARMA! I was a practicing Critical Care Registered Nurse for 12 years prior to this incident.

RE: 14875, 12/31/05
I have exactly the same side effects ... dizziness, light headedness, ataxia, weakness, migraine headaches and nausea. I walk into walls, lose my balance and stagger. I take 150mg all at one, at night. I've been taking it for over a year but just recently have started experiencing all the effects I just listed

Dec. '03, visiting Susan in Collegeville PA for Christmas, got ear infection, found her doctor, got Zythromax, 5 day anti-biotic. Back to home, the usual light headed dizziness continued; went to local Internist who said infection was now in the other ear, Jan. '04. Got Levaquin 500 mg, 10 days. Infection cleared, but stagger, wobble, can't walk a straight line began at the same time; persisting all day everyday. Feb. '04 got Augmentin, 875 mg, 2 per day, 14 days; doctor apparently still thought I had an infection. Started the "tour" of ear specialist, neurologist, MRIs, finally a trip to Univ. of N.C. Hospitals, more tests; a second MRI was in there some place. Now on Neurontin (Gabapentin) 300 mg, now up to 4 per day. No help. UNC Hospitals says Peripheral Neuropathy; locals think it might be Ataxia.
Side effects started in Jan. '04.

extreme dizziness, ataxia, weakness, and nausea
either this is due to the Lamictal or I'm an incredible wimp
I'm still working up to my recommended dose
as of now, I'm only on 100/day
I have the flu or it's the Lamictal

I was on depakote from 1982 until 1996 for seizure disorder. I first notice that I was having problems walking straight, I began to stagger needing help climbing stairs. I began falling, difficulty with speech & writing. During this time I was going to Barrows Neurological Group. One doctor diagnosed me with dimentia then the next doctor said I had Ataxia. By 1996 I was no longer able to bathe myself, get in and out of bed, conversation was very limited with answering questions with yes or no. I had been wheelchair bound for 5 years. On my visit to my neurologist in August 1996 my husband talked to the doctor about changing the medication. I was then put on Neurontin. In one month after this switch to the new medication I was talking. When I saw the doctor he told me he wanted me out of the wheelchair and walking again. Let me tell you that this was no easy task. It took me 3 years to learn to walk again. I believe doctors should be made more aware of this reaction. I believe if I had gone on much longer on Depakote I wouldn't be alive today.

Not sure how to respond to you but I am doing so through here.

I have adapted to the ataxia (what I call walking into walls), tiredness, some short term memory loss etc. I still have some of them and I have been on it for a year, maximum dosage 1800 mgs. Now I am on 900 mgs. I guess I want to get off because I cannot stand the "hypoglycemic" feeling I get from it. Feeling weak and hungry, also I have gained weight on Neurontin. All along I have never really "believed" that there was such a thing as Atypical Facial Pain but as I come down off the drugs wierd things happen. My neck begins to hurt me is the one side effect of lowering the dosgage of Neurontin.

If you like, you can e-mail be directly at eburden@bbwg.com