Summertime, and the living is easy. Except if you have MS, in which case the heat of summer brings with it the splendors of heat sensitivity. Many MS patients experience an amplification of their disease symptoms with even the slightest rise in body temperature, and as summer temperatures soar, so too does the intensity of the potpourri of debilitating symptoms those stricken with the disease have to deal with.
heat miser! (Photo credit: picturemommy)
Back in the days before MRIs and spinal fluid analysis, a common method of diagnosing MS was the "hot bath test" (click here), which involved placing the patient in a tub of hot water to see if their symptoms worsened. Weakness, numbness, spasticity, cognitive dysfunction, and visual disturbances are just some of the symptoms that ramp up in seeming lockstep with rising temperatures, and as record highs have been registered in alarming numbers across the US these past few weeks (temperatures in large parts of the country exceeding 100°F for days on end), I can only imagine the MS patients in those locales sticking close to their air-conditioners, trying desperately to fend off the summertime blues.
For some reason, once the outside temperature exceeds 90°F, I find that my symptoms tick up even if I stay inside my air-conditioned apartment, which may seem strange, but facts are facts. I normally don't suffer from cognitive dysfunction (at least not any more than I did when I was healthy), but when the outside temperatures reach heat wave levels, I can literally feel my thought processes slowing down, and the rest of my symptoms likewise assert themselves with growing force. I become a lethargic, weak, numb skulled mess, much like some members of this year's edition of my beloved Boston Red Sox, who don't have MS as an excuse. As if the heat and my MS wasn't enough, having to suffer through a subpar Red Sox season is making me extremely grouchy, and we've only just begun July. To make matters worse, the living embodiment of evil on Earth, the New York Yankees, are once again winning game after game, like a demonic baseball steamroller. I loathe them. Really, my antipathy for the fucking New York Yankees knows no bounds, so much so that sometimes I scare myself. Hot fun in the summertime, indeed…
Okay, now that I've strayed way off topic, on with the monthly festival of MS related news items that I deem worthy of inclusion in these "Bits and Pieces" posts. Hey, it's my blog and I'll deem if I want to, even with a mind addled by a heat wave and the vagaries of America's pastime. And don't start with me about how baseball is no longer America's favorite pastime, or I'll futilely attempt to strike you about the head and neck with my neurologically challenged extremities…
Boy, I really am grouchy. Anyway, on with the show…
♦ I've previously written about the difficulties physicians have in diagnosing MS (click here), and several recent news items highlight this troublesome situation. A recent study by researchers in Oregon (click here) surveyed 122 MS specialists, and 95% said they had seen at least one patient in the last year that had been misdiagnosed with MS by another physician. Three quarters of the surveyed MS specialists said they'd seen three or more misdiagnosed patients within the last year. The researchers speculate that an overreliance on MRI imaging for diagnosis may lie at the heart of the problem. Surprisingly, as long as that patient wasn't on any MS therapy, one in seven of the doctors who had seen misdiagnosed patients did not always tell the patient, reasoning that changing the diagnosis might cause psychological harm. Maybe I'm just a cold hearted bastard, but if I found out my doctor suspected that I had been misdiagnosed and didn't tell me, he or she would soon be definitively diagnosed with power wheelchair induced broken shins.
An MS specialist from the Mayo Clinic recently delivered a lecture stating that the misdiagnosis of MS is "underrecognized, underappreciated, and understudied" (click here). Because of the push to get patients on disease modifying therapies sooner rather than later, it seems many doctors have liberalized their criteria for diagnosing MS, resulting in the misidentification of many diseases and conditions that can mimic MS. The lecturing physician further pointed out that by quickly labeling patients with MS, treating MDs miss out on the opportunity to identify new diseases, or separate out conditions that are rarer than MS but might respond to different treatment regimens.
I've talked about the controversial nature of my own diagnosis and my years long effort to get some kind of definitive answer. I'm continuing these efforts, because in my gut my tenuous diagnosis of MS or SS (Solitary Sclerosis-click here) just doesn't feel right. The specialists who examined me at the National Institutes of Health told me that they have seen misdiagnosis rates ranging from 5%-15% in many of the studies they'd conducted on MS patients, and the above news pieces bear out the difficulties involved with diagnosing MS. I don't mean to whip up doubt among the readers of this blog, but if your MS diagnosis is labeled "atypical", or doesn't fit with your understanding of the disease, I'd suggest that, at the very least, you get a second opinion. Despite what many doctors would lead you to believe, physicians are just as human as their patients, and as such are hardly infallible. There's an old joke: "What do you call someone who graduates from medical school with a C- average?" The answer is, of course, "a doctor". Hilarious, right?
♦ On the ever turbulent CCSVI front, an important piece of investigative reporting by journalist Anne Kingston was recently published in Canada's Maclean's magazine (click here). Through the use of government memos, the article details the convoluted and often disingenuous bureaucratic contortions conducted by the government officials charged with developing government policy regarding CCSVI. Since Canada has a system of nationalized universal healthcare, the government is intimately involved with the funding and implementation of medical research. The contents of the memos cited in the Maclean's article reveal that the appearance of objectivity was often given higher priority than objectivity itself, and that quite often efforts were directed more at quieting the uproar of patients demanding research into CCSVI then at designing and funding the much needed research.
What's truly disturbing about all this is how little regard patient well-being was apparently given throughout the documented process. Certainly, a quick and decisive decision by Canadian officials to fund and conduct robust CCSVI research could very well have led to reliable answers to the many questions that swirl around CCSVI to this day. Instead, Canadians flocked to treatment centers outside of their home country, where many thousands were treated but their outcomes insufficiently tracked, so we still can't judge with any real accuracy the efficacy of the treatment protocols they underwent or even the overall validity of the CCSVI hypothesis itself. The fact that over 25,000 MS patients have been treated for CCSVI worldwide and we've heard outcome reports from only a relative handful of them represents a colossal wasted opportunity for objective research.
The results of one small Canadian study that did get done were recently released (click here). The province of Newfoundland and Labrador spent $400,000 on the study, which compared 30 patients with MS who had travelled outside the province to have the therapy and 10 who did not. Participants were subjected to an array of tests before the treatment and then at intervals of one month, three months, six months and one year post-procedure. The patients were assessed using a combination of tests — questionnaires which the patients filled out, MRI scans of their brains, and a standardized test used to gauge function in MS patients. Those tests looked at manual dexterity, ability to walk and mental acuity. At the end of 12 months, no measurable benefit from CCSVI treatment could be detected, despite the fact that many of the treated patients reported feeling better on the questionnaires that they filled out. All patients were evaluated in a blinded manner – that is, the physicians assessing the patients and their test results did not know which of the patients had undergone treatment and which had not. An 18 minute video of the news conference announcing the study results can be downloaded at the end of the article linked to above.
Although the results of this study are disappointing to those of us that believe that CCSVI plays some role in the MS disease process, because of its size and limited scope this research can in no way be labeled definitive. While the study was blinded, there was no control group (patients who had undergone a "sham" procedure) involved in the research, leaving some room for doubt. Additionally, the patients who did undergo treatment were likely treated by a variety of doctors, all using different treatment techniques and practices, as no standard treatment protocol has yet been agreed upon. Still, the study does raise some legitimate questions regarding the efficacy of CCSVI venoplasty, and patients considering undergoing CCSVI treatment should be aware that the largely glowing patient reports found on CCSVI related Facebook sites and YouTube videos do not tell the whole story. Indeed, my own extremely anecdotal experiences with patients who have undergone treatment, both in my personal life and through e-mail sent to me via this blog, indicate that a significant number of those who have treatment experience little or no benefit, and some even report a worsening of symptoms. Of course, I've also heard from many patients who do report substantial benefit, but at present the outcome results appear to be a very mixed bag. This could, of course, speak more to deficiencies in the CCSVI treatment protocol than to the overall CCSVI hypothesis itself.
The Newfoundland study does pick up on one potential extremely problematic aspect of the current state of CCSVI treatment, in that it found that one quarter of the treated study participants had blood clots or other blockages in their treated veins at the 12 month mark. If this finding is even close to accurate, the possibility exists that thousands of treated patients may be walking around with clots in their veins with no knowledge of it, as most have had little or no postprocedure follow-up. This is just one more area of the CCSVI treatment picture that begs for quick and serious study, and suggests that the many patients who have undergone treatment should seek follow-up examinations to make sure they have not developed clots or other occlusions.
One new and extremely controversial wrinkle in the CCSVI landscape is the emergence of jugular bypass surgery , which a few pioneering (and very brave) patients are turning to after experiencing continued problems with their veins despite undergoing multiple venoplasties. Unlike catheter venoplasty, which is minimally invasive, jugular bypass surgery is extremely invasive, involving the removal of a vein from the leg to be grafted onto a blocked jugular vein by means of open neck surgery. This procedure can only be considered extremely experimental. You can learn more about it through the video testimonial of a CCSVI Alliance activist who recently underwent the surgery, which she posted to YouTube (click here).
♦ Here are a couple of studies that just might qualify for one of my favorite topics, asinine research, but I'll try my best not to be snarky about them. Really I will. Both of them have to do with the propensity of MS patients to fall, given the fact that MS makes you all weak and wobbly and stuff. The first study, out of the Netherlands, found that MS patients are at an increased risk for fractures, particularly those caused by taking a tumble (click here). Shockingly, compared to the general population, PwMS have a four times greater risk of suffering broken hips, because, well, they kind of fall down a lot more than healthy people do, what with their wonky legs and all. Astoundingly, the researchers further found that MS patients who took drugs that can cause drowsiness and decreased motor coordination, such as some antidepressants and antianxiety medications, were at any even greater risk of doing a face plant than those patients whose brains were undefiled by pharmaceutical cocktails. Mind-bogglingly, the study, which looked at records from 2415 MS patients, actually found that patients suffering from a disease of the nervous system that causes weakness, paralysis, and balance issues who take pharmaceutical drugs that can make one feel totally blotto are at much greater risk of falling down and going boom than healthy people with perfectly functional arms and legs. Who would have guessed it? After conducting this exhaustive research, the analysis concluded that efforts designed to minimize the risk of falling by MS patients would be a very good idea. Now, why didn't I think of that the last time I found myself sprawled on my bedroom floor? Stupid me.
A second study found that vision loss may contribute to problems with walking in multiple sclerosis patients (click here). This study compared 22 MS patients with 22 age matched control subjects, and found that reduced visual acuity was associated with poorer gait performance under low light conditions. The study demonstrated that many of the MS patients experienced improvements in their lowlight vision when they wore glasses with contrast enhancing yellow lenses, which actually is a useful finding. Certainly, not being able to see in conjunction with the typical walking problems associated with MS is not a great combination, and many MS patients have poor low light vision. I know that I do, as I'm blind as a bat in dim light. This study was conducted by a medical student at Florida State University, and used no commercial funding, so although the findings may seem fairly self-evident, I applaud the student for identifying a problem and actually coming up with a workable solution to it. Wearing glasses with yellow lenses helps night vision, something I wasn't aware of, which is a bit of info that definitely might keep me from stumbling in a dark room were I to put it to use.
So, a piece of potentially valuable data from a study conducted by a medical student at very little cost. Terrific. There is, though, one line in the article describing the research that did make me want to slam my head into my desk. "On the gait tests, MS patients' functional ambulation performance scores were negatively associated with EDSS disability scores, indicating that increased disability was correlated with poorer walking performance." Really? And all this time I assumed that as disability increased walking became easier and easier. Now, finally, I understand why I have to use that freaking wheelchair. Mystery solved. This, people, is why medical research is so damned important.
♦ For quite some time there have been hints that cannabis (marijuana, pot, grass, tea, boo, weed, herb, ganja, vipe, Mary Jane, reefer, chiba, muggles, chronic, etc.) might have neuroprotective properties, and thus be useful in slowing the progression of MS disability, but sadly, a recent study refutes this claim (click here). Those who are devotees of medical marijuana need not flush their doobies down the drain, though, as there is still ample evidence that partaking of the demon weed does help reduce neuropathic pain and muscle spasticity, two major complaints of MS patients. The oral cannabis spray Sativex has been approved for use to combat MS pain and spasticity in England and Canada, but not here in the good old USA, because relieving the pain and spasticity of MS patients might lead them to try harder stuff.
Hey, this gives me a nice opportunity to post a song by one of my favorite all-time musicians, Fats Waller, singing about smoking the vipe way back in 1943 (actually, this recording is a cover of a song that was originally written in 1927). Enjoy!
We are having a heat wave here in Ontario. Temps over the past couple days have been in the triple digits(F). I too find that even in air conditioning, if the temps go over 90 with high humidity my MS symptoms worsen. And the changes in barometric pressure, before and during severe changes in weather, like summer downpours and thunderstorms, create havoc! Go figure.ReplyDelete
I imagine that changes in barometric pressure and humidity have something to do with the "indoors with air-conditioning" syndrome. Also, when the temperatures outside get brutally hot, air conditioning probably isn't as efficient and indoor temperatures rise as well. Whatever the reason, it sucks…Delete
I often refer to myself as an old piece of machinery that seizes up when it gets over heated. Even when treated for CCSVI I felt like the venoplasty was a system reboot, similar to pressing Control Alt Delete. Somehow my motherboard was damaged by a virus and hard to fix once fried. But I still haven't tried Plasmapheresis. Why can't we solve this? Maybe Stephen Hawking can figure us out!ReplyDelete
Studies have shown that a subgroup of MS patients respond positively to plasmapheresis. I tried it back in 2006, but didn't get any benefit from it. If nothing else is working, it's certainly worth a try, though…Delete
Thanks for the updated info WCK. I'm inspired to get me some of that Fats Waller and some medicinal and sit back and watch the World go by, and try not to be enveloped by raging envy as people effortlessly WALK past.ReplyDelete
Sounds like you've got yourself a plan there, and a very pleasant one at that. As for the raging envy, I guess that's something we all grapple with. I also find myself wanting to stop random "walkers" and tell them just how lucky they are, and to not take anything in life for granted. Despite our current compromised physical conditions, the same holds true for us, as since we're dealing with a progressive disease certain abilities we may take for granted today won't be there at some time in the future, unless we can get a handle on our progression. Not a pleasant reality, but reality nonetheless, and we must play the hand we're dealt as well as we can…Delete
Oh how I love your asinine research reports, and hey, I've got some yellow polarized fitover sunglasses out in the car and they do work well. I remember we used to ski with them in bright light as they reduced the glare on those moguls--but of course that was in my Montana days.ReplyDelete
Also, thanks for the Fats Waller song which is new to me but shouldn't be, as that's a habit I was forced to put behind me back in the 70's and believe me, I was well acquainted with it at the time.
As for the weather in MN, I'm not complaining about anything because I've got electricity, unlike my neighbors on the eastern seaboard, 900,000 of them who are still waiting.
Very strange weather so far this summer, and in fact so far this year. There's definitely something in the air (pun intended).Delete
Fats Waller is wonderful, his music exudes a barely contained joy that is extremely infectious. It's hard to feel down when listening to Fats…
As for asinine research, I'm sure there will be more, as the flow seems to be ceaseless.
I definitely agree that misdiagnosis of having MS when one doesn't is not acceptable, however the reverse is also true and there doesn't seem to be any further investigation or research into how to avoid those with be it "atypical" presentations or PPMS (which is included in the MS forms but in no way exhibits the same noted lesions in the brain as RRMS) being left undiagnosed or even misdiagnosed as fibromyalgia or chronic fatigue or the oh so frustrating conclusion as it must be related to something psychological like depression or anxiety or ????? Neurologists and Radiologists who subscribe to the criteria deemed necessary for an MS diagnosis totally ignore those of us with PPMS even though every medical study in regards to PPMS clearly states that with PPMS, presentation of lesions in the brain as seen by MRI are fewer and smaller to non-existent in those with PPMS as compared to those with RRMS. Also, findings now confirm that many with PPMS have demyelination without remyelination which further flies in the face of the diagnostic criteria necessary for MS. Either way, the public does not benefit from misdiagnosis nor should they be left misdiagnosed when further information and clinical findings prove an error has been made. I for one, would like to see changes made in how all of these diseases without conclusive testing methods are diagnosed. The first suggestion I have is for Physicians to actually LISTEN to their patients rather than simply relying on tests that may or may not provide definitive evidence either for or against someone having a specific disease.ReplyDelete
I agree that the situation with misdiagnosis is extremely frustrating, and I believe that PPMS is often used as a "waste bucket" diagnosis given to people whom the doctors can figure out. That said, PPMS itself is a real disease, that unfortunately doesn't get a whole lot of attention from researchers because the disability progression brought about the disease is generally too slow to conduct the kind of "quick hit" research that is funded by the major drug companies. Relapses and remissions are easy to count, but it's very hard to quantify progression over a one or two-year period.Delete
I've been recently diagnosed with MS. Regarding the beneficial effects of cannabis for MS, very recently, an new study form "Universidad Complutense de Madrid" (a spanish investigation team. I'm spanish too) has proved that the use of another cannabis chemical compound called CB1/CB2 (not THC, the one used in the study you mention), at least in EAM (experimental Autoimune Encephalomyelitis), helps to slow down and sometimes stop the disease. It yet remains unclear wether a similar effect is to be produced in humans with MS. Even though, i think it is a quite a promising study.ReplyDelete
I leave you the link of the study published in neuropharmacology (it was published after the one you mention on your blog):
By the way, i really like your blog!
Best regards from Barcelona.
Thanks for the link, very interesting stuff. When reading the study I posted in the blog it did occur to me that cannabis involves more than just THC, and that concentrating on THC may miss the bigger picture.Delete
Hopefully, the research will translate to humans, but the mouse model of MS is really quite terrible, and the majority of promising research on mice doesn't carry over when applied to humans, unfortunately.
Totally agree. Take, for instance, COPAXONE or TYSABRI, drugs that "cure" EAE in mice. But continuing with the topic, even more recently another study has been published also confirming the neuroprotective and anti-inflammatory effects of Cannabidiol. I think it is a very interesting read (you can read it all as it is free):Delete
I am so sorry, that you are a Sox fan.ReplyDelete
Thanks for your sympathies. I honestly can't understand the psychology of Yankees fans, to me it seems like rooting for Goliath over David. Hard not to like Derek Jeter, though…Delete
Thanks for including the piece about the Canadians. We are lost in a sea of doing nothing is better than doing something government.ReplyDelete
Does heat affect Pwms? Who am I? What year is this? Is there a hockey puck in my abdomen?ReplyDelete
That's so sad that doctors aren't taking the proper time to diagnose MS properly. That's a life changing diagnosis, and if there is a chance it could be something more treatable I would hope that the person diagnosing the disease would take their time to find out.ReplyDelete
Stacey, the problem is that there is no definitive test for MS, so even when someone is given a diagnosis of MS it's only because other diseases have been ruled out, thereby leaving MS is the only likely contender. Unfortunately, there are so many diseases that mimic MS, it's almost impossible to eliminate all of them, so inevitably, at least until proper diagnostic testing is developed, there will be instances of misdiagnosis.Delete
MS is such a heterogeneous disease (meaning that it hardly ever looks the same from patient to patient) that it might turn out not to be one disease at all, but rather a collection of similar diseases sharing some diagnostic markers.
I've seen some of the best MS neurologists in the business, and have spent years getting poked and prodded with every test imaginable, and still a definitive diagnosis can't be reached. Unfortunately, most of the differential diagnoses for MS are no more treatable than MS itself is, but of course that's not a reason to just tell someone they have MS without being 100% sure. Then again, I'm uncertain whether any doctor can be 100% sure that their patient suffers MS and not one of the literally 100+ diseases and conditions that can look like MS.
Unfortunately, there's very little about multiple sclerosis that is simple.