Well worth looking at
https://wwwmsviewsandrelatednews.blogspot.com/2018/07/dietary-intervention-trial-seeking.html
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts
New drug and MS
"A drug that alters the immune system has been described as 'big news' and a 'landmark' in treating multiple sclerosis," BBC News reports. The drug, ocrelizumab, proved effective in two related studies, for treating both the primary progressive and the relapsing remitting types of multiple sclerosis (MS).
We have focused our analysis on the second study, as relapsing remitting MS is the most common type, accounting for around 80% of cases.
MS happens when the body's immune system mistakenly attacks the brain and spinal cord. For the relapsing remitting type of MS, people have periods of worsening symptoms (relapses) and periods without symptoms, or with only mild symptoms (remissions). Over time, symptoms tend to get worse.
Ocrelizumab works by suppressing B cells, which are part of the immune system. In this 96-week study, people who took ocrelizumab had fewer relapses each year and their symptoms were less likely to worsen. Also, brain scans showed less inflammation or damage to the brain, compared to standard treatment.
However, people who took ocrelizumab were more likely to have adverse reactions, including infections, some of which were serious. People taking ocrelizumab were also more likely to get cancers during the study period.
It is unclear whether steps could be taken to reduce the possibility of adverse reactions.
Another issue is that of price. Ocrelizumab is what is known as a monoclonal antibody and this class of drugs tends to be very expensive.
The BBC reported that "patients in the UK may be disappointed" as the NHS may not be able to provide the drug to all people with MS.
Where did the story come from?
The study was carried out by researchers from 16 universities, hospitals and research centres in the US, Canada, Italy, the UK, Germany, Spain, Poland and Switzerland. It was funded by F Hoffman-La Roche, the company that makes ocrelizumab. Many of the researchers involved in the study are employees and /or shareholders in F Hoffman-La Roche.
The study was published in the peer-reviewed journal New England Journal of Medicine.
BBC News gave a fair summary of the studies and included some useful quotes from researchers involved, as well as independent experts.
What kind of research was this?
Researchers carried out two identical double-blinded, randomised controlled trials (RCTs) of ocrelizumab for relapsing remitting MS. Randomised controlled trials are usually the best way to see whether one treatment works better than a placebo or (as in this case) a different treatment.
What did the research involve?
Researchers recruited patients aged 18 to 55 with relapsing remitting MS, who they randomly assigned to either ocrelizumab or interferon beta, the standard treatment for the disease. They followed their progress for 96 weeks and compared the results.
The patients were recruited separately into the two trials of 821 and 835 participants, which were run independently. Patients came from more than 300 trial centres, across at least 32 countries. Ocrelizumab was given through an infusion every 24 weeks, and interferon beta through injections three times a week. Interferon beta is a widely used treatment for relapsing remitting MS and also works by suppressing immune cells.
To ensure no-one knew which treatment each patient got while the trial was underway, patients had dummy infusions or injections of the treatment they were not assigned to.
In their analysis, the researchers looked at how many relapses patients had on average each year. They then looked at other indicators such as symptom scores over time, and scans.
The brain and spinal cord of people with MS get areas of inflammation and lesions, where the immune system has attacked the coating of the nerve cells. These show up on magnetic resonance imaging (MRI) scans.
Researchers looked at the data separately for the numbers of relapses, then pooled the data for some of the other markers, as the trials were run identically.
What were the basic results?
The average number of relapses per year was lower for people who took ocrelizumab:
- 0.16 per year for ocrelizumab compared to 0.29 per year for interferon beta, in both trials.
- This represents a reduction in relapses of 54% (rate ratio (RR) 0.54, 95% confidence interval (CI) 0.40 to 0.72) for trial one and 53% for trial two (RR 0.53, 95% CI 0.4 to 0.71). The slight difference may be because the two trials did not have identical numbers of participants or may have been a chance finding.
People who took ocrelizumab were less likely to have permanently worsened symptoms after 12 weeks. Looking at the pooled data, 9.1% of people had permanently worse symptoms if they'd taken ocrelizumab, compared to 13.6% who'd taken interferon beta.
People who took ocrelizumab were less likely to have new signs of damage to their brain. The numbers of new lesions seen per scan was:
- 0.02 for people taking ocrelizumab (both trials)
- 0.29 (trial 1) and 0.42 (trial 2) for people taking interferon beta
However, the treatment has side effects, caused by suppression of the immune system. There were four cancers in the ocrelizumab group and two in the interferon beta group.
Another five cases of cancer occurred during a year-long extension to the study, during which everyone took ocrelizumab.
We don't know for sure that the cancers were caused by the treatment, but part of the immune system's job is to keep cancer under control.
One third (34%) of people who had ocrelizumab had a reaction to the infusion. This was most often itchiness, rash, throat irritation and flushing, but one patient had a life-threatening reaction, although they recovered with treatment.
Infections were also more common among patients who took ocrelizumab than among those on beta interferon.
How did the researchers interpret the results?
The researchers say their results show that B cells play a role in the development of MS, which had previously been seen as primarily caused by T cells (another type of immune system cell).
They say that "Additional and extended studies will be required in order to determine whether the outcomes observed in these 96-week trials … translate into enhanced protection against accrual of disability over the long term."
Conclusion
This study shows promising results for a new approach to treating MS. However, the study period is relatively short (96 weeks is about 20 months, so less than two years) and MS is a long-term disease. If this drug is approved for use, longer studies will be needed to be sure that this treatment lives up to its early promise over many years and to monitor for adverse reactions in real life, particularly cancers.
Some people with relapsing remitting MS do well on existing treatments, and have only infrequent relapses of mild symptoms which get worse very slowly.
But for most patients on standard treatment, the damage to their nervous system worsens over time, making it progressively harder to carry on with normal activities. If this drug can lessen the damage to the nervous system, it might help arrest this process.
The numbers of cancers seen in the study gives some cause for concern. While there were also cancers seen in the standard treatment group, it's a reminder that powerful treatments which affect the immune system can also cause harm. Bigger, longer-term studies should give us a clearer picture of how the balance of benefits and harms stacks up for ocrelizumab.
It is expected that these studies should begin in 2017.
If you are interested in taking part in clinical trials for MS, visit the UK Clinical Trails Gateways site for MS research.
Neuroplasticity
Norman Doidge’s two books, The Brain That Changes Itself (more than a million copies sold) and, just published, The Brain’s Way of Healing (which comes complete with that “mind-bending” quote, from the New York Times), present such dilemmas within their own covers. Doidge, a Canadian, is a distinguished scientist, a medical doctor, a psychiatrist on the faculty of both the University of Toronto and of Columbia University in New York. He started out as an award-winning poet and a student of philosophy. A profile he once wrote of the novelist Saul Bellow won the President’s Medal for the best single article published in Canada in the year 2000.He is persuasive and curious as a writer, and rigorous as a thinker, though what he writes about is at the edge of our current understanding of mind and body.
Doidge doesn’t stop there. He takes the principle of stimulating “unused” circuits of the brain and making them fit for other purposes, into analyses of new therapies for stroke and MS patients, as well as children with learning disorders, attention deficit and even autism. A variety of techniques to stimulate the brain’s innate plasticity is being employed. In many cases this involves an energy source, low-intensity lasers, or light, or heat, which appears to help stimulate neuronal connections. Doidge examines the ways a device applied to the tongue, causing vibration, helped an opera singer with MS to regain his voice. He documents how use of sound, particularly the sound of a mother’s voice, and certain types of chanting, has helped young children with symptoms of autism to overcome those symptoms.
In all of this he is careful to stress that the science behind neuroplasticity is still in an unformed state, and that just because the methods work for some patients, they will not work for all. Even so, not a man shy of ambition, Doidge sees the potential of a whole new medical practice as the ideas develop, which will require the “active involvement of the whole patient in his or her own care: mind, brain and body”, as well as a health profession that focuses not only on the patient’s deficits “but also searches for healthy brain areas that may be dormant and for existing capacities that may aid recovery.” I phoned him in Toronto last week to find out more…
In the seven years since your first book came out, it seems a lot of the stories for this book have come to you. Would it be fair to say you are the “go-to guy” when it comes to neuroplasticity?
I can agree with the first part. Many, many stories came to me and I chose ones that were illustrative of particular facets of healing.
The people you focus on in the book seem to share an unusual willpower. Do neuroplastic techniques require a particular cast of mind?
You are correct that they are unusual, and I think there is a reason. When you are going against paradigm, whether you are a clinician or a patient who is willing to try something, you are going to get someone who is quite high on openness psychologically and very conscientious, because to do a lot of these interventions you have to apply yourself diligently. High openness and extreme conscientiousness don’t often go together, but when they do it’s a killer combination.
It almost requires a faith that neuroplasticity exists…
I would put it slightly differently: you don’t have to believe it, but you have to suspend your disbelief and just do it.
What was the moment of your conversion?
I’m still not completely converted. I still have to pinch myself about what is possible. Having been educated in the period in which belief in the doctrine of the unchanging brain was mainstream, still when I hear about some person who has had brain damage or some other problem I find that my heart sinks. But I also realise that mainstream reaction is not adequate. We really do not know what a particular person will be able to do until we attempt some of these interventions.
Did it help that you were a philosophy student and a poet before you did medical training?
I decided to go into medicine because philosophy of mind opened more questions than it closed. It seemed that studying biology would be very helpful in understanding some of the questions that agitated me. However, when I got to studying the description of the body and brain as just a complex machine with fixed parts, that also seemed inadequate. I went and studied these models in depth to try to understand how they could depict something as animate as the brain and the body using a metaphor of something that is inanimate. It was only when I thought I had mastered that metaphor and I realised that it didn’t hold water that I went to study psychiatry at Columbia.
In some ways, it takes a philosophical cast of mind to grasp the shift in understanding you describe...
Most neuroscientists don’t come from a philosophical background. They basically believe that mind is merely what the brain does. But I have a problem with that because none of these people can really define what mind is or what thought is. The statement that “the mind is only what the brain does” is a statement that only makes sense in a pre-neuroplastic era. Now that we know that mind also changes brain, should we not equally say that “the brain is what mind does”?
One of the things that struck me, reading your books, is how entrenched our ideas of the brain’s essential fixed and unregenerative nature are. Why are those ideas so powerful?
The idea that the brain couldn’t heal came from a number of sources, not least the poor prognosis of many brain problems. It wasn’t a meeting of, you know, the Biological Pessimist Society one day, it was more that clinical evidence of people with brain problems showed that they did not seem to cure themselves spontaneously. There were great quarrels in the 19th century as to whether the brain worked locally or globally. The Frenchman Paul Broca showed that speech problems inevitably occur when a person has a stroke in one area of the brain and the matter seemed to be settled. But even then there were some children who had damage to Broca’s area who could still speak. Still, once that idea took hold, people couldn’t imagine that if your speech area is damaged another area could be trained up to do it. To train a person who has lost the ability to speak to use another area of their brain is very incremental, patient work applied over time by someone who really understands what it takes to grow new connections, and so on. Neurologists said that people could only get better in the first six months or a year after a stroke because they were describing what they saw. It became a dogma and it overlooked the exceptions.
Particularly a western dogma. One of the things your book argues is that in other cultures and at other times there is strong evidence that people have and had access to some of these techniques.
Yes, well I didn’t set out to do that. When I finished my first book I had come to the conclusion that many of the claims that eastern medicine was making, which led to a lot of eye-rolling among western doctors, had at least to be re-examined in the light of neuroplasticity. By the time I had finished The Brain That Changes Itself, there were significant studies, which no one disputes, which show major changes in the structure of the brain of Tibetan monks, for example, brought about through the practice of meditation. I suppose it is not really a hard sell once you have grasped that the brain is plastic, that someone who has spent 30,000 hours meditating might actually have changed the structure of their brain. I mean, a London taxi driver can change his brain by studying routes through the city for a year or two.
But from that it seems quite a long way to imagine that visualising certain scenes can allow someone in chronic pain to actually escape that pain, for example. That is still a major stretch for western medicine.
I hope I ended up showing that it is actually quite feasible once you absorb the idea of how plasticity works. And of course the other big thing that eastern medicine talks about but often has trouble defining is the role of “energy” in its relationship to mind. I was very sceptical about this. I would listen and people would be saying “energy this” and “energy that”. We have to know that we are not talking in some kind of magical way.
What changed your mind about those definitions?
All the energies I describe can be easily defined and measured in western terms. The thing is, there are no lights, colours, smells or sounds inside the brain. There are patterns of electrical information and our sense receptors, our retinas, the cochlea in the ear are, in energy terms, transducers. Meaning that what they do is translate one form of energy – sound, light, heat – into another. It is the latter – electrical patterns of energy in the brain – that in one way or another help or cause the brain to sculpt itself, neuroplastically. Somehow or other, thought itself can do that work. It became apparent that this link between mind, brain and energy really is central to who we are and what we do.
You suggest often that neuroplasticity is settled fact. That doesn’t seem to me to be the case in the medical profession and certainly not beyond it…
Within the lab, within science, within neurophysiology, neuroplasticity is established fact – nobody is challenging it.
If it were to become accepted beyond the lab, the implications are obviously enormous, not least in the hope that it might give to people who suffer some of these conditions. What are the limits?
We don’t know the limits, but I could describe a little of how the world will look if people are actually able to integrate this finding. The whole idea of the patient as the passive recipient of medical intervention would be overturned. With learning disorders, for example, a tremendous amount of human suffering could be avoided if schools did some very simple assessments and gave children some of the very simple interventions that I describe in the two books when they are very young.
The forces ranged against that position, not least from the drug companies, are powerful ones. How would they be overcome?
Well, the first thing I should stress is that I am not in any simple-minded way anti-drug. Half of my own patients are on medication. The difference is that everyone also gets some kind of mind-based intervention as well, be it psychotherapy or some of these other therapies. Too many of our interventions are based on looking at symptoms and not nearly enough on what we might call pathogenesis – underlying causes. Some of these neuroplastic interventions actually work well on pathogenesis. There are people in the book who managed to get off medication. Some of the people in the book who had learning difficulties actually managed to get off the medication and ended up completely cured.
Still a sense of “miraculous” attends much of this, such as Mr Webber restoring his sight. Did that trouble you?
When people hear this story they feel that it is miraculous, but at the same time I knew that this could not be a miracle. I knew that there must be something in nature that allowed this to happen. I really think we have come through an age where science is funded by government and granting agencies and you get a grant by doing the bidding of those bodies. I am not contemptuous of that. But truth be told, the real scientist begins not with a particular task but a sense of wonder at how the world works. I became comfortable with wonder, writing both of these books – it triggers curiosity and pulls you towards it, but it triggers anxiety at the same time because you don’t know what is behind it. I have tried to explain over and over again how mind changes brain structure and function but nobody alive has yet properly defined mind and no one has explained properly how so-called ethereal thought can change so-called material structure. The whole subject is filled with wonder.
Have you applied some of these things to yourself?
I came to plasticity from these very western problems. I do physical exercise. I do tai chi to get into that flow state. I do the brain exercises that are most rigorously backed by science. Then there is the question of attitude changes. I don’t know what will happen in the future: I could of course be struck down by any one of these terrible things in this book. But my sense of what is possible for a person cognitively in the second half of life is much expanded.
There is the danger that false hope can be raised by your reports and stories. How heavily does that responsibility weigh?
I think I might be more aware of it than anyone on the planet right now. I’ve been exposed to a lot of stories that cannot be explained by the usual paradigms. In my world, false hope and false pessimism are evil twin brothers, each worthy competitors for doing harm. Because we’ve had this machine metaphor for the brain, and machines can’t fix themselves, there’s a lot of false pessimism in this area. I try to be extremely careful in the book to never give guarantees but to say in this situation this or that is worth a try.
There are four new interventions in the book just for traumatic brain injury alone. There are stories about people improving with the use of low-intensity lasers for traumatic brain injury. There is good evidence for sound-based interventions. There are a number of different things we can try. The patients who end up in the clinics of neuroplasticians at this early point in the history of the science are almost always people who have tried and failed at all the conventional treatments. They are not easy cases.
Are you confident that this is the beginning?
I sincerely believe that. Michael Faraday was doing work on electromagnetism in the mid 19th century and the implications are still being studied and developed today. This is very early. It is about the interface between mind and brain and this is a huge topic. Because mental acts have the ability to trigger specific circuits that subserve those acts there is a possibility of developing specific interventions for certain problems using the mind or the mind coupled with various natural forms of energy to stimulate the process.
The other hopeful element is that such interventions appear fairly inexpensive…
They are, though almost all require a lot of the patient’s time. One reason neuroplasticity hasn’t been translated from lab to clinical practice more quickly is that it is hard to beat the business model of using medication when you see a patient. Nothing is faster than a red-hot prescription pad. On the other hand, think of the children described in the book who would have been on medication for life for ADD but instead maybe have the equivalent of 40-60 hours of these therapies. I have seen they really take responsibility for their health and their cognitive function.
The obverse of that, you suggest, is the way children are staring at screens and giving themselves different “neuroplastic” problems…
I started to write about that in 2007 and Susan Greenfield picked it up at the same time. Techie people didn’t like it. They said: “Show us the data.” Well, the data is overwhelming at how sedentary life is changing everything about our brains.
Students no longer have to go to a library, they can sit at home and have the library come to them. That’s another two hours walking and carrying books and opportunities for exercise and interaction taken out of your life. In America, children are spending 11 hours in front of one screen or another – anyone who thinks that does not have an effect is dreaming.
I liked your idea that, as far as the brain is concerned, the most interesting things happen in peripheral vision and that by literally focusing too much on what’s in front of us, we risk missing the accidental and serendipitous, where new connections are made…
Yes. Novel things happen when you are concentrating on what you think you know and something occurs in left field. That’s how we evolved, how our brains evolve.
MS Hack
1.) Heat Sensitivity - MS patients are often heat sensitive. When exposed to warm temperatures, which is inevitable in New Orleans, those living with MS may experience worsening of their neurological symptoms. Cooling equipment, such as vests or towels, are very useful to keep the body nice and cool and can be found at most sporting goods stores. Ice packs wrapped in towels also work well! The Sharper Image even has a cooling car seat cushion for $59.99!
2.) Memory - Some MS patients have difficulty with short-term memory or struggle with multi-tasking and organization. In a world where technology runs the show, we need a password for nearly everything. Apps such as oneSafe and Keeper are great because they keep all of your passwords secure and in one place. On the same note, try to put your phone, keys, purse, etc in the same place every day to eliminate wasted time looking for lost items and build a routine.
3.) Preparation - Take advantage of applications like our patient portal, MyOchsner, that allow you to access lab results, radiology reports, and office visit notes. MyOchsner is also a great way to communicate with your healthcare provider quickly. Come prepared to visits with your healthcare provider by making notes prior to the appointment. Write your appointments on the calendar in your phone or tablet, but mark the appointment time as 15-30 minutes earlier than it is actually scheduled. It's important to make the most of your time together.
4.) Fatigue - Fatigue is the most common symptom of multiple sclerosis, affecting about 80% of those who are diagnosed. Something as routine as going to the supermarket can be extremely tiring for someone with MS. Many grocery stores are now offering online shopping and curbside pick-up. If you do go to the grocery store on your own, ask your healthcare provider to fill out a DMV form that will allow you to get a handicapped tag or license plate. Be sure to take advantage of the scooters available at most stores if you don't have your own.
5.) Home Safety - Gait and visual disturbance sometimes make people living with MS more prone to falls. Safeguard the home and tape/velcro down rugs, put corner protectors on sharp-edge furniture and a non-slip bath mat outside of the tub or shower, and make sure hallways and bathrooms are well-lit at night. Motion sensor LED lights are easy to install and can be found on Amazon for $15-25 for a pack of 3.
6.) Loss of Fine Motor Coordination -Trouble picking up small items, writing, typing and texting can be difficult for MS patients who have weakness in their hands or numbness in their fingertips. There are a lot of available products that can make doing fine motor activities much easier, such as a jewelry helper accessory kit, an easy reach grabber tool, and kitchen utensils with rubber grip handles. Enlarging the font on your phone can make texting easier.
Other equipment or tricks that I've seen my own patients use to simplify their day include a rollator walker with a seat (good for sitting or carrying items), grab bars for the shower or bath, raised toilet seats, shower chairs, shoe helpers (makes putting on shoes easier), and lift chairs among many, many others.
Over-the-Counter antioxidant lipoic acid holds promise in improving patients’ lives after an OHSU pilot study.
Over-the-Counter antioxidant lipoic acid holds promise in improving patients’ lives after an OHSU pilot study.
Treatment options currently are limited for people suffering from secondary progressive MS. The randomized double-blind study involved 51 participants who completed the 2-year trial. 27 people were given a 1,200-milogram daily dose of lipoic acid, with the remaining 24 participants given a placebo.
Researchers are using the findings from the pilot trial to design the expanded multi-site clinical trial to begin later this year in Portland and other sites that have yet to be finalized.
“These are high doses,” said Rebecca Spain, M.D., M.S.P.H., an assistant professor of neurology in the OHSU School of Medicine. “And while it seems safe, we won’t know whether it actually improves the lives of people with MS until we can replicate the results in the pilot study through a much bigger clinical trial. Fortunately, we’re going to be able to answer that question with the participation of kind volunteers.”
MS is a chronic condition that affects an estimated 2.3 million people worldwide. The major finding of the pilot study involved measuring the degree to which lipoic acid arrested the rate of whole brain atrophy, as measured through magnetic resonance imaging.
The study revealed a 68% improvement over the placebo in slowing the rate of whole brain atrophy in patients with secondary progressive MS. For the sake of comparison, a clinical trial involving the recent FDA-approved pharmaceutical Ocrevus showed an 18% improvement over a placebo in slowing the rate of whole brain atrophy for patients with primary progressive forms of the disease.
In addition, the pilot study suggested improved walking times and fewer falls among study participants who took a daily dose of lipoic acid compared with those who received the placebo. Researchers are eager to test those outcomes in the larger clinical trial.
A companion study, published concurrently by Neuroimmunology & Neuroinflammation, measured the rate of absorption and clearance of lipoic acid through periodic blood tests of pilot study participants. The results will help to inform the design of additional clinical trials.
Lipoic acid was determined to be safe and well-tolerated by pilot study participants. Stomach upset was the most frequent side effect.
http://www.upi.com/Health_News/2017/06/30/Study-Patients-with-MS-may-benefit-from-over
Lemtrada
It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?”
The answer: I’m not sure.
For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly, but steadily, declined.
So, I’m really not sure how much of an impact any of the disease-modifying drugs that I’ve been on since 1996, including Lemtrada, have had on my MS. I like to think that all of the shots, pills, and infusions that I’ve been treated with over the past two decades have, at least, slowed the progression of my disease, but it’s really hard to know for sure.
Enter Lemtrada
As you probably know, Lemtrada is designed to halt further progression of MS. In addition, some patients have had some symptoms reversed. But that benefit wasn’t expected, it just sort of appeared during the clinical trials. On the other hand, more than a few patients are reporting a variety of negative symptoms following their infusions.
My 6-month timeline
The first three months post-infusion were a real roller coaster. The lowest point on the ride was at about two months post-infusion, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days, I was much better.
Around the five-month point, my wife thought I was walking better. Today, just past six months, I think I am — sometimes, but not always. I also can flex my left foot up from the ankle just a little, and I think that’s new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been significantly reduced. So, all positive stuff.
But, on the other side of the coin, I developed an aching pain in both hips around mid-February. At times, that pain would shoot down one or both legs when I put weight on them. It’s been worse in the mornings, particularly if I’m trying to get up from squatting down. But, is this drug-related, or is it something else? My neuro says it’s not related to the infusions. Some Lemtrada patients have suggested that it’s the feeling of my body “making new bone marrow.” I just don’t know.
This pain has slowly eased since it began four months ago. That improvement may be related to receiving physical therapy treatments in April and May and getting back into the swimming pool in June. That physical therapy and the swimming may also be responsible for the mobility improvements that I mentioned earlier. Or is it the Lemtrada? Or, maybe it’s a combination of both.
The six-month mark is the time at which, I’ve been told, the ups and downs tend to level out or to swing upward. That seems to be the case with me. So, I guess it really doesn’t matter whether it’s Lemtrada, or PT, or swimming that seems to be helping, or if it’s the drug or the natural course of my MS that’s responsible for my low points. I’ll continue doing what I’m doing and hope for the best.
MS Hack for hot weather
Heat sensitivity
In 1890, Dr. William Uhthoff first described the link between heat and MS. Known as Uhthoff ‘s syndrome, it occurs when exposure to heat or strenuous exercise temporarily worsen MS symptoms. As little as a one-degree elevation in body temperature can affect nerve conduction and cause a feeling of weakness, especially in the arms and legs.
Before MRIs and lumbar punctures were used to diagnose MS, patients suspected of having the disease were subjected to a hot bath test. If the patients experienced an increase in weakness or fatigue or any loss of vision when submerged in hot water, they were diagnosed with MS.
Healthline News cited a 2011 study in which Swedish researchers found that more than 70 percent of all MS patients experience some degree of heat sensitivity. According to the study’s authors, “The most striking result of this study is that heat sensitivity is significantly correlated with — and … appeared as an explaining factor for — the most incapacitating symptoms of MS: fatigue, concentration problems, and pain.”
According to the National MS Society, “It is important to remember that the heat generally produces only temporary worsening of symptoms. It does not cause more disease activity, such as demyelination or damage to the nerves themselves. The symptoms generally reverse quickly when the source of increased temperature is removed.”
Keep your cool
So how can you keep from overheating? The National MS Society recommends staying in an air-conditioned environment during periods of extreme heat and humidity. Consider using an oscillating fan while exercising indoors or in a cool pool (less than 85 degrees).
During outdoor activity, you can minimize overheating by using cooling products. When dampened, cooling products, such as neck wraps and bandanas, display unique cooling properties. You can also stay cool by wearing a vest with insulated pockets that hold small ice packs.
You can order cooling equipment from the Multiple Sclerosis Association of America. If you have questions about the MSAA Cooling Program, you can call MSAA at 1-800-532-7667 or send an email to clientservices@mymsaa.org. You can also download an application for the cooling program at www.msaa.org.
Everyday Health suggests additional ways to manage heat intolerance from MS, such as:
- Carrying a bottle of water with you throughout the day, and drinking frequently
- Enjoying a cool treat such as chilled juice or frozen treats to keep your body temperature down.
Simple lifestyle changes can make a difference, too. Consider gardening or running errands in the early morning or late evening instead of during the heat of mid-day. Make sure you always have shade available, even if it means carrying an umbrella everywhere you go. Wear a lightweight, loose, breathe-able clothing, light colors and a hat. Duck into air conditioned buildings as often as you can.
If, despite your best efforts, you become overheated, remember to remove yourself from the heat source as quickly as possible. I have found that after being outside on a hot day, I can cool off by applying refrigerated aloe vera gel to my arms and legs. If you get extremely overheated, you might benefit from taking a cool shower or pouring a bottle of cold water on the top of your head.
DIY MS Cure?
I was diagnosed with MS 4 years ago (2012). Since I live in Serbia my immediate treatment options were next to non-existing. I was put on a waiting list for interferons and told I'll get those in 3.5 years or so since our healthcare system is broke. Btw interferons don't help that much, disease progression goes down by only 20-30%.
In early 2013, new medication emerged in USA, Tecfidera (by Biogen idec), with very promising results, disease progression was down by 50% in average, even more for those who started using it early. One thing, DMF pills market price is 36.000$/year. Couldn't afford.
I started research on my own, red Tecfidera pills ingredients list, and found out that the only active ingredient in those is dimethyl fumarate (DMF), a chemical that could be obtained with relative ease. With some effort and external help I managed to create homemade Tecfidera analogue and I'm taking it ever since. My MS is now fine. MRI and blood tests confirm it.
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In early 2013, new medication emerged in USA, Tecfidera (by Biogen idec), with very promising results, disease progression was down by 50% in average, even more for those who started using it early. One thing, DMF pills market price is 36.000$/year. Couldn't afford.
I started research on my own, red Tecfidera pills ingredients list, and found out that the only active ingredient in those is dimethyl fumarate (DMF), a chemical that could be obtained with relative ease. With some effort and external help I managed to create homemade Tecfidera analogue and I'm taking it ever since. My MS is now fine. MRI and blood tests confirm it.
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More hacks for people with MS
In the Bathroom
Getting Dressed
Getting Out The Door
While You are Out on the Town
Tackle Your Chores
Around the
Staying on top of you Healthcare Needs
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