Showing posts with label National Institute of Health. Show all posts
Showing posts with label National Institute of Health. Show all posts

Monday, April 25, 2011

Situation Normal, All Fracked Up…

uncertainty principle

Image by Mathieu Struck via Flickr

When I started this blog, I was determined that it wouldn't be a treatment diary, so I haven't detailed the daily, weekly, and monthly ins and outs of my medical meanderings. Still, I've recently written about the fact that my diagnosis has been called into question, and I've received several inquiries in that regard. I thought it might be helpful if I gave a few more details about my mystery diagnoses, and how it's affected some of the treatment choices I've made and continue to make.

After my diagnosis of MS in March 2003, I quickly became uneasy with my doctor's conclusion. Like most other newly diagnosed patients, I immediately hit the Internet, reading all I could about the disease and interacting with dozens of patients on MS forums. The more I investigated, the less convinced I became that I actually had multiple sclerosis. Yes, two lesions did show up on my MRI, one tiny spot in my brain, and a much larger and more troublesome lesion at the base of my brainstem. Tests on my cerebral spinal fluid, though, revealed no Oligoclonal-bands (click here), telltale signs of CNS immune activity that show up in a majority of MS patients. O-bands are a bit less common in patients with progressive MS, the flavor of the disease I was suspected of having, but still, their lack fueled my reason to doubt.

Additionally, I had a variety of peculiar physical symptoms and some health history that just didn't seem to mesh with a diagnosis of Multiple Sclerosis. About six years before my first MS symptom struck (a slight limp in my right leg, which has since progressed to severe weakness and spasticity in my entire right side, and progressing weakness on the left), I was suspected of having Discoid Lupus (click here), a form of Lupus that attacks the skin. Although that diagnosis was never quite nailed down, my doctors at the time were confident that I did have something very strange going on in my immune system. After approximately 3 years, my Discoid Lupus type symptoms (small skin blemishes that left tiny crater shaped scars, hence the word "Discoid") burned out, to my considerable relief. Soon after, though, I was diagnosed with Hashimoto's Thyroiditis, an autoimmune disease that destroys the thyroid gland. I started showing signs of other types of endocrine dysfunction as well, indicating a cascading failure of my pituitary gland. Although Hashimoto's Thyroiditis is often seen in patients with MS, pituitary problems are not. About three years after these endocrine problems surfaced, my telltale limp showed up, and I was soon given the MS label.

About a year into my MS saga, I switched MS doctors and started seeing my current neurologist. He immediately suspected that I might be suffering from some other disease (he suspected Neurosarcoidosis-click here), and ordered an extensive battery of tests. When none came back positive, he deduced that Primary Progressive Multiple Sclerosis was the most likely diagnosis, and so the initial determination stood.

Since there is no actual test for MS, determining whether a patient suffers from it is a diagnosis by exclusion. The physician explores other possibilities that might explain the patient's symptoms, and if none pans out, the diagnosis of MS is assumed. In many patients, multiple sclerosis makes itself readily apparent. A relapsing remitting course of disease, the occurrence of enhancing CNS lesions on MRI images, and the presence of O-bands in the cerebrospinal fluid are all highly indicative of a multiple sclerosis diagnosis. Cases of the disease that are progressive from the outset are harder to diagnose, as there are quite a few maladies that can mimic progressive MS (click here).

Despite the fact that progressive MS is notoriously hard to treat, and there are currently no approved treatments for PPMS, I am not the type to sit around and do nothing while some insidious enemy hacks away at my body, and my neurologist is known for his aggressiveness in fighting the disease. We embarked on a comprehensive battle to attack my disease, which has included a wide variety of treatments, some quite outside the box, which are literally almost too long to list. Suffice it to say, none has had any effect whatsoever on the course of my disease.

Along the way, my illness has shown itself time and again to be extremely atypical, most notably in the fact that my MRI images have never changed. The two lesions that showed up in 2003 are still there today, and have never altered in size or appearance, or been joined by any others. MRI images of my CNS taken eight years ago are indistinguishable from those taken six months ago. Because of all of the atypical features of my illness, I eventually decided to seek another expert opinion, and was seen at the Johns Hopkins MS center in the winter of 2006. After undergoing a rigorous series of tests, Johns Hopkins also concluded that although my disease was certainly strange, they could find no indication that it was anything other than atypical PPMS. During the following few years, I kept in contact with the doctors at Johns Hopkins, and in 2008, after I sent them some recent MRI images (which remained unchanged) and explained that my disease had progressed significantly, it was requested that I come back down to Baltimore for another examination. This time, the doctors concluded that I very likely did not have MS, but they could not come up with a suitable alternate diagnosis. Several were suggested (Sjogren's disease and mitochondrial disease among them), but further testing ruled out these other illnesses.

At this time, I was accepted into a study being conducted at the National Institute of Health's main campus in Bethesda, Maryland, which was seeking to identify patients with clinically definite multiple sclerosis for use in further MS research. The NIH was finding that many of the subjects they were using in their multiple sclerosis research studies were actually misdiagnosed, and these misdiagnosed patients were polluting their research data. Over the next 18 months, I made four visits to the NIH's tremendously impressive facility outside of Washington, DC, during which every conceivable test was conducted. At the end of the process, the NIH declared that my test results and disease presentation did not fit the definition of multiple sclerosis by any known diagnostic criteria, but they too could not come up with a reasonable alternative. Needless to say, the situation was, is, and I'm sure will continue to be incredibly frustrating.

My primary neurologist here in New York, who runs a state-of-the-art research laboratory in addition to his clinical practice, recently did an extensive analysis of my spinal fluid, which turned out to be so strange that he had the analysis, which took several weeks to complete, repeated to confirm the results. Unlike many other MS patients, my neurologist and I have a very comfortable and frank relationship, and he told me just how bizarre my spinal fluid scans were in very colloquial and colorful language (I'll let you use your imagination to fill in the blanks).

Since it now seems likely that I'm suffering from either a) one of the strangest cases of MS on record, or b) some other autoimmune process that is attacking my central nervous system in addition to various other bits of my anatomy, my neuro suggested that I try IVIG (click here), a treatment that has been shown to be effective in some cases of MS, and perhaps more importantly for me, a variety of other autoimmune conditions that can attack the CNS. IVIG is a blood product made up of the antibodies of over 1,000 blood donors, which has been shown to attenuate the aberrant immune response seen in a variety of diseases, and is typically given monthly. Since I have a history of experiencing unexpected and sometimes frightening side effects from new medications, we started out by doing half a dose of IVIG about a month ago (the treatment is usually given in two infusions over two days, but I only did one infusion the first time around). I didn't suffer any negative side effects, so later this week, on Tuesday and Thursday, I'll be doing my first full dose of IVIG.

Many of you are probably asking yourselves where CCSVI fits into my treatment picture. I had my first venoplasty about 13 months ago, which did reveal a blockage caused by a muscle pressing on my right internal jugular vein, but no other readily apparent venous abnormalities. Unfortunately, the muscle bundle is currently impossible to treat using the available treatment modalities, as ballooning would have no effect on the pressure being put on the vein by the muscle, and a stent would likely be bent out of shape, and possibly fracture, due to that same pressure. It is also uncertain as to whether the muscle bundle is causing significant disruption to the perfusion of blood through my central nervous system (Dr. Zamboni himself had a look at my images, and cast doubt as to the significance of the blockage). I had been planning to undergo another CCSVI treatment procedure sometime soon, because of the advances that have been made in the treatment protocol in the 13 months since my first attempt, but I've decided to put this off for at least a few months in order to properly ascertain whether or not the IVIG is having the desired effect. Doing a CCSVI treatment now would only muddy the waters, and the blood thinning regimen given after the procedure could interact with and/or interfere with the action of the IVIG.

I recently underwent a Doppler sonogram done to the Zamboni protocol, which did reveal signs of CCSVI (confusing, since my initial venoplasty did not reveal these abnormalities). This further blurs the issue, as it's become quite clear that I likely do not have MS, and CCSVI has been shown to have a high correlation with multiple sclerosis. However, recent studies also seem to indicate that the venous abnormalities known as CCSVI may also be prevalent in other neurologic diseases, so I very well could have both CCSVI and a disease other than multiple sclerosis. If the IVIG doesn't do it's stuff, I will definitely revisit CCSVI, very likely sooner rather than later. Even if I do experience benefit from IVIG, I'm inclined to undergo another venoplasty sometime in the not-too-distant future, to investigate the blood flow abnormalities indicated by the Doppler ultrasound. As I've written before in this space, waiting on getting a CCSVI venoplasty done is not a terrible option, as knowledge regarding CCSVI is constantly growing, and the treatments used to address it are evolving by the day.

As I'm sure you can imagine, this has all been extremely hard to sort out, but I'm now comfortable with my treatment decisions going forward. Despite the questions surrounding my diagnosis, I still consider myself an MS patient (since no other label really applies), and the experience of my disability progression is identical to that of a patient suffering from aggressive PPMS. In spite of the confusion and distress caused by all of this uncertainty, in a way not having a diagnosis gives me some reason for optimism, as it could turn out that whatever I have is more treatable than PPMS. I continue to hope that some brilliant doctor, upon examining me and going over my voluminous record of test results, will suddenly exclaim, "Eureka! You're suffering from the most advanced case of Cooties I've ever seen! Simply eat 10 red M&Ms a day for the next two weeks, and you'll soon be running marathons…"

Hey, if you don't have dreams, you have nightmares…

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Monday, November 30, 2009

CCSVI (the Vascular Theory of MS): Separating Fact from Fiction

Veins of the head and neck.

Since the airing of a Canadian television newsmagazine piece on CCSVI, there has been a veritable frenzy on Internet chat rooms and bulletin boards regarding this radical new theory. Unfortunately, the tsunami of information that is being bandied about is often misleading and sometimes just plain wrong. Based on scant knowledge, many are making extraordinary claims regarding the theory and the treatment options it presents, most of them based on little actual fact.

For those unfamiliar with CCSVI (chronic cerebrospinal venous insufficiency), I've made two previous posts about it, which you can find here and here. I've been fastidiously following the development of the theory and the treatments being used as a result of it for at least ten months now. Though I'm far from the be-all and end-all of CCSVI information, I do feel qualified to make some intelligent observations about it.

For readers unacquainted with CCSVI, the theory basically states that narrowing in the veins that drain the central nervous system (CNS) leads to an abnormal flow of blood through the CNS, which damages nerve tissue via several different mechanisms, and leads to the lesions and immune responses that are the hallmarks of Multiple Sclerosis. First proposed by an Italian doctor, Dr. Paolo Zamboni, whose wife was stricken with MS, the theory has won over several fervent supporters. Dr. Zamboni is treating MS patients with a modified balloon angioplasty procedure he calls "The Liberation Procedure", and another physician at Stanford University, Dr. Michael Dake, is opening up the blocked veins of MS patients using stents. There is also a doctor in Poland, Dr. Marian Simka, who appears to be using a combination of these two methodologies. As knowledge of the theory has spread, many harsh critics have quite expectantly begun to ring in. I'll attempt here to cut through the noise, and present the facts as I know them, along with some commentary.

To begin with, let me state that although I remain somewhat skeptical, I'm a cautious believer in the concepts put forth by the CCSVI theory. It is certainly my hope that the theory bears fruit, as it will offer MS patients a myriad of new options to treat the disease, and will lead research scientists in entirely new directions as they investigate the many aspects of Multiple Sclerosis. Hopefully, it will help bring about a rethinking of the autoimmune theory of MS, which states that, for reasons unknown, the immune system goes bonkers and starts attacking the body's own cells. Quite frankly, we've been fed that line of bullshit for far too long. If the CCSVI theory starts gaining significant traction, expect a withering storm of criticism to come from some mainstream neurologic circles, as well as from the pharmaceutical industry, which stands to lose untold billions in the sales of drugs designed to suppress the immune system.

Dr. Zamboni's research began with his imaging the vascular systems of MS patients, sufferers of other neurologic diseases, and healthy subjects. He reports that he found signs of vascular abnormalities in almost 100% of the MS patients he studied, but none in either the patients with other neurologic diseases, or the healthy subjects. On its face, this would seem to be very compelling evidence. However, as my doctors at the National Institutes of Health (NIH) have pointedly explained, this claim throws up some big red flags. Because MS is a notoriously hard disease to diagnose, and there are many diseases that mimic MS, in any large population of diagnosed MS patients, there will be a significant segment that have in fact been misdiagnosed. Therefore, finding 100% of any trait among a large population of MS patients is practically impossible. As a matter of fact, the way I first became involved with the NIH was as part of a study being used to identify patients that the National Institutes of Health could be certain actually suffer from MS, because misdiagnosed patients were skewing the results of many of the MS studies they had undertaken. The NIH is trying to identify a pool of patients they can be confident actually have MS, for use in future studies. This is how the NIH ascertained that it's very likely I do not have MS.

Still, the Zamboni findings appear to be compelling. Before they can be accepted as scientific fact, though, they must be replicated by independent researchers, and so far, no such evidence has been presented. There are several different research groups currently putting together studies of CCSVI, and a large imaging study is already ongoing at the University of Buffalo, so we should have either independent verification or refutation of the theory sometime within the next 6 to 12 months. Before we get these independent reports, however, it is extremely premature to state anything with certainty about the theory.

In my mind, CCSVI could explain several of the mysteries surrounding MS, but fails to explain many others. It's one of the first theories to adequately explain the formation of lesions and the immune response that are the calling cards of MS. It also explains findings such as those that tie cigarette smoking to an increased incidence of MS and a quicker progression of the disease. Since smoking is known to exacerbate vascular issues, if MS is in fact a vascular disease, it stands to reason that smoking would have a considerable negative effect on it.

On the other hand, the theory does not address what we know about the geographic distribution of MS, the male-female ratio that is well known to exist in MS, the existence of "MS clusters" (which would seem to point to an infectious cause), or the unmistakable link between MS and Epstein-Barr virus (100% of MS patients are infected with EBV. I know, many of you reading this have never had Mono, but the vast majority of people infected with EBV have no idea that they carry the virus. It can often be asymptomatic, or present as a bad cold or flu).

Having said that, MS is an extremely heterogeneous disease, and it may be that CCSVI is THE answer for a subset of MS patients, but may play only a partial role, or no role whatsoever in others diagnosed with the Multiple Sclerosis.

As for the surgical interventions now being used on patients whose imaging (via MRV and/or Doppler imaging studies) indicates that they have venous abnormalities related to the CNS, there are controversies surrounding these, as well. The problems stem from the fact that the procedures being used were all developed for use in clearing out the obstructed arteries of cardiac patients. Remember, CCSVI is concerned exclusively with veins.

There are major differences between arteries and veins, both in form and function. Arteries are designed to facilitate the outflow of blood from the heart to the various organs and regions of the body. They must be able to withstand the tremendous internal blood flow pressures generated by the beating heart, and thus their walls are stiff and resistant to tears and breaks. Veins, on the other hand, function to return deoxygenated blood to the lungs and heart. They are designed to be flexible and pliant, and their walls are much thinner and more prone to tearing than the walls of arteries. Arteries grow narrower in the direction of blood flow, while the opposite is true of veins, which grow wider as they return blood to the cardiopulmonary system. Therefore, a stent that gets loose in an artery is typically only pushed deeper into that artery. A stent that gets loose in a vein generally has a clear path to the heart.

In self-reported results, Dr. Zamboni's balloon angioplasty Liberation Procedure appears to be quite effective in reducing relapse rates and disease severity. Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated. Furthermore, stenosis that is found in problematic areas, such as high in the jugulars, is not treatable by balloon angioplasty.

The surgery being attempted at Stanford University is much more aggressive, and places stents at the stenosed areas of blockage. Stenting has very rarely been tried in veins, and much less so in veins associated with the brain and spinal cord; the stents used have been almost exclusively designed for use in arteries. So far, slightly over 60 patients have been treated with this procedure, and there have been some serious complications reported. Despite the fact that I have a significant stenosis in my left upper internal jugular, both the doctors at the National Institutes of Health and my primary neurologist have repeatedly and adamantly warned me against undergoing this procedure, citing the possibilities of brainstem hemorrhages, stent migration (which would almost inevitably lead to stents finding their way into the heart), and the ever present danger of bleeding and blood clots. Although the majority of the patients that have undergone this procedure report positive results, a minority have had a difficult time recovering from surgery, and have reported nerve pain and nerve damage. There has been one near calamity associated with the surgery, as one patient required emergency open-heart surgery to retrieve a stent that had become dislodged in his jugular and migrated to his heart. (Update: as of 12/08/09, CCSVI surgical procedures at Stanford have been halted, pending the start of a clinical trial, scheduled to begin in the first quarter of 2010.)

In short, the research surrounding CCSVI appears to be very promising. Until this research is replicated by independent organizations, no real conclusions can be drawn. There have been many other promising leads in the history of MS research that have eventually led to dead ends. I'm hopeful that CCSVI will not be one of them, and instead will lead to a seismic shift in our understanding of not only MS, but other so-called autoimmune diseases as well. I cannot make any such statement, however, until the research is verified by multiple sources. As for the surgical procedures now being offered to treat stenosed veins, they must be characterized as experimental, and as such, carry with them a sizable degree of risk, more so with the stenting procedure than with balloon angioplasty. If CCSVI theory turns in to CCSVI fact, these surgical procedures will in time be refined, and the risk in undergoing them will be diminished.

As exciting as Dr. Zamboni's research is, I think it's important that the MS community as a whole steps back and takes a breath, and waits to see what further research bears out. I understand how hard this can be with a progressive neurologic disorder breathing down your neck. Believe me, I'm nearing the point of desperation myself, but in situations like these, we cannot let hope and emotion cloud our actions and understanding of the issues. These are potentially life and death matters, and need to be approached with clarity of mind and a complete grasp of the complicated issues being presented.

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Thursday, November 19, 2009

NIH Thinks I DON'T Have MS. Wow!

National Institutes of Health

Well, after four months and a huge amount of poking and prodding, the National Institutes of Health Neuroimmunology team has decided that it's very unlikely that I have Multiple Sclerosis.

Holy shit.

Despite the fact that I've been disputing my diagnosis almost since the day I received it, and this news should be hugely validating, it's left me a little breathless, my head spinning faster than a chunky yuppie trying to lose her love handles at the local Bally's. Not exactly doing a victory dance here, and not only because I could just as soon dance as crap the Hope diamond.

Since July, I've made four visits down to Bethesda to be seen by the doctors at the NIH. During that time, I've undergone extensive testing, the results of which seem to confirm my long-held suspicions about my diagnosis. I only have one central nervous system (CNS) lesion of consequence, located at the base of my brainstem, and this lesion has not changed one bit during the eight years I've been getting regular MRIs. The lesion appears to be an old scar, and doesn't look to be "active". The very name "Multiple Sclerosis" implies more than one lesion, so right there we have a problem. Additionally, multiple tests reveal no evidence of inflammation or immune activity in my CNS, another hallmark of MS.

My test results look more like those of a patient who had suffered a damaging central nervous system "event" at some time in the past, had suffered disability at that time, and has remained stable since. In actuality, though, I've experienced a slow and steady progression of symptoms. When I first took note of the fact I was limping, 6 1/2 years ago, I could easily walk several miles, and the limp was the result of some slight weakness in my right knee, which only showed itself after a good long hike. Fast forward to today, when my right arm and leg are basically paralyzed, and I have increasing weakness and numbness on my left side as well. My progression has been continuous during this time, which is a complete disconnect from what my test results would appear to reveal.

My clinical presentation (disease history, physical neurologic exam) does resemble that of someone with PPMS, so it still could be that I have a very, very atypical form of that disease. The NIH thinks it more likely, though, that I'm suffering from some other progressive neurologic illness, of which there are more than a dozen. Unfortunately, none of them (including PPMS) currently has any treatment, and my symptoms and test results don't neatly fit into a diagnosis of any of them. I could be suffering from some new "Wheelchair Kamikaze Disease", and even though new diseases are usually named after the doctor that discovers them, if this is a new disease, I absolutely insist that it be called "Wheelchair Kamikaze Disease". Not exactly the rock star fame I was looking for in my younger days, but any port in a storm...

The other big news out of my examinations down in Bethesda is that I do have a vascular abnormality like those that are described in the CCSVI theory of MS. For those unfamiliar with this theory, which hypothesizes that MS is actually a vascular disease, I've described it in two previous posts on this blog, here and here. I believe this is must reading for anybody who has MS, as this theory could change everything we think about Multiple Sclerosis.

I had a CT venogram done several months ago, which revealed that I have a stenosis (narrowing) of my left internal jugular vein, very high up in my skull. This narrowing is directly adjacent to the central nervous system lesion on at the base of my brainstem that is causing all of my problems. Though they're far from sure, the NIH believes that this vascular abnormality could be related to my neurologic degeneration, so we're going to investigate that possibility further, through additional testing, to see if a connection can be made between blood flow problems and the damage being done to my nervous system.

There is currently a doctor in California who has done endovascular surgery on several dozen MS patients who have been shown to have stenosis, placing stents in their narrowed veins. So far the results have been encouraging, but I'm going to wait to see what the NIH and my primary treating neurologist (Dr. Big Brain) have to say on the matter. Despite the NIH results, Dr. Big Brain is not convinced that I don't have MS, and hasn't bought into the vascular theory, either. I have an appointment to see him on December 5, when we'll try to hash these things out.

File:Conrad von Soest, 'Brillenapostel' (1403).jpgOn the cataract front, I'm less than thrilled with the results of the surgery, so far. I paid quite a significant sum out-of-pocket for special lenses to be implanted into my eyes, to replace my natural lenses which had developed cataracts. I was told these implants would very likely give me near normal distance vision, but that I would still require reading glasses. To a person who's been wearing glasses to correct his nearsightedness since age 6, the promise of "near normal" distance vision sounded almost too good to be true.

Well, it was. As it stands now, these miracle lenses have overcorrected my eyes, and now the wonders of modern medicine have magically transformed my former nearsightedness into farsightedness. Abracadabra.

After the second surgery, the doctor told me to buy some drugstore reading glasses so that I could read while my eyes healed. Surprise, surprise, when I put the reading glasses on, instead of clearing up my close up vision, they improved my distance vision. In order to read, or see a computer screen, I had to buy a second pair of drugstore reading glasses, which I wear in front of the first pair in order to see the fracking screen. So, yes, as I sit here writing this, I'm wearing two pair of drugstore reading glasses. Can a guy catch a break? To top it off, the glasses that correct farsightedness are the kind that make your eyes look really big, so now I can look forward to zipping around in my wheelchair all bug eyed. Incredible that despite being half paralyzed, I'm still as vain as a homecoming queen, isn't it?

I have my next follow-up with the eye doctor on November 30, when my eyes will be healed enough to get a final prescription for glasses, but if my eyesight has not improved by then, he's going to get quite an earful. Jackass.

Okay, deep breath, time to kick into high gear some of that Zen stuff I'm always talking about. But first I think I'm just going to curse a lot, like a Tourette's patient on Red Bull. Cover your ears...

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Tuesday, September 1, 2009

More MS on the Internet

Diagram of neuron with arrows but no labels. M...Image via Wikipedia

Since my last entry updated a post I made several months ago, I figured I'd keep the trend going by updating yet another post I made several months back, which was titled "MS on the Internet". That post was made up of a list of Multiple Sclerosis related websites that I find useful, and it received a good response from WK readers.

Since then, I've come across several additional websites that I think are of value. Most of these sites aren't devoted strictly to Multiple Sclerosis, but offer a wealth of information on neurology and general healthcare, in addition to having sections specific to MS...

Can you tell I spend way too much time on the web?

TheBrainMatters.org-This website is run by the American Academy of Neurology, and covers a wide range of neurologic disorders, including a section devoted to Multiple Sclerosis. It also has a "Find a Neurologist" tool, which users might find very helpful.

The Neurology Patient Pages-This site contains summaries of research studies from the journal Neurology, prepared especially for patients. Although not all of the studies are pertinent to Multiple Sclerosis, the summaries are a rich resource for information on all neurologic disorders.

Wellsphere-A general wellness information site, with lots of good material on nutrition and alternative and complementary therapies. The site hosts some educational and user-friendly patient communities, and has even named Wheelchair Kamikaze as one of their "Top Health Bloggers".

Patients Like Me-This is a unique website, which allows patients to set up their own profiles, and track the progression of their disease and the treatments that they undergo. Covering a wide range of conditions and diseases, this site allows users to "compare notes" with other patients who share similar experiences. The site also hosts some active patient forums.

The National Institute of Neurologic Disorders and Stroke-This is the official website of the NINDS, which is the arm of the National Institutes of Health responsible for all government-funded neurologic research. The site is a treasure trove of information on all neurological disorders, as well as info on clinical trials and patient resources.

ClinicalTrials.gov-A comprehensive registry of all federally and privately financed clinical trials conducted in the United States and worldwide. The listings include inclusion criteria as well as contact information for all of the trials. If you're interested in getting involved in a clinical trial, this is the place to look. The registry is easily searchable by disease and location.

MedlinePlus-A terrific site that includes information on the latest medical news, drugs and supplements, a medical dictionary, a medical encyclopedia, and a directory of physicians and hospitals.

NeurologyChannel.com-Run by physicians, the site offers a wide range of information and services, including a patient forum, and a section devoted to patient stories.

The Health Care Blog-An great site for commentary on healthcare issues and policy. Makes for some very interesting reading.

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