Columbia Engineers Provide New Insight into How the Brain Regulates Its Blood Flow

Why is it so difficult for neurologists and other doctors in charge of neuro-Imagedegenerative diseases to at least peruse paper after paper published that shows a direct link to vascular anomalies in these conditions?

 “Once we realized the importance of endothelial signaling in the regulation of blood flow in the brain,” Hillman adds, “we wondered whether overlooking the vascular endothelium might have led researchers to misinterpret their results.”

Do People Die from Multiple Sclerosis?

“Knowledge is power: knowledge without the use of common sense and wisdom is intellectual suicide”~ Linda Rousay

 People die every day from MS. It’s true. The reason you don’t hear much about these deaths is because of semantics. When you are diagnosed with Multiple Sclerosis it is considered an incurable disease. When you die, an autopsy may or may not be preformed. Regardless, the outcome is the same, once you are labeled with MS, it doesn’t matter if the neurological damage stops your heart from beating or your intestines close up not allowing food in, death will always be listed as “Died of Natural Causes.” Therefore the claim that MS rarely kills is a blatant lie, everyone with MS will die, the aggressiveness of the disease just dictates how fast it will kill you. The ANA published a paper in 2009 about 5 pages long with one little over looked statement. “It is impossible to know how many people die from complications of MS, for reasons stated above..( for the sake of time, I didn’t paste the entire page here ~LRousay).

…”Post mortem examinations are not routinely performed in patients with MS. In the United States alone, reported deaths from complications of this disease exceeded 1,000 in 2007.” MS is usually diagnosed in people between the ages of 20-40. Those figures are misleading because many people are misdiagnosed in their teens only to be correctly diagnosed with MS 10 to 20 years later. Many people are not diagnosed for many years after symptom onset. In the case of trauma onset MS, a person might be diagnosed much younger. 

Post mortem evidence has shown that a substantial number of people are never diagnosed with MS during their lifetime. Scleroderma, chronic fatigue syndrome, Hughes Syndrome, Fibromyalgia, NMO or Devic’s disease, dementia, major depressive disorder, in fact over a dozen conditions or more are routinely misdiagnosed when a the person indeed has MS. It works in reverse also. People with those conditions may be given an MS diagnosis when they do not have it at all. 

In addition to MS, we are as susceptible to any other diseases or condition as the general population. Because our symptoms are so diverse, it becomes very convenient to blame every ailment or physical anomaly on Multiple Sclerosis. People have died from cancer, COPD, liver failure, kidney disease etc. who could have been saved if they were correctly diagnosed. 

Chronic pain exists for 40 to 60 % of people with MS. If their doctor treats only the pain, terminal illness can develop while the person has no knowledge of its existence because they are led to believe it is just another manifestation of MS. 

In general, most neurologists agree that the life span is “near normal” for PwMS. When I asked what “near normal” is from the CDC, I was told that 8 or 9 years would be considered a reasonable loss of time a person could expect with MS. I don’t know about you but I think I might have a few important things to do in 8 or 9 years’ time; especially if I had a “near normal” quality of life.

Common causes of death in People with MS:

  1. Pulmonary involvement
  2. Severe infections, sepsis
  3. Aspiration pneumonia
  4. Suicide
  5. Thermal Injury
  6. Demyelinating lesions, involving brain regions that regulate cardio-respiratory activity
  7. Pulmonary embolism
  8. PML

 A study done in Scotland in 1990’s: a sampling of 216 patients 67% died from complications of MS

85 % die within 20 years of onset at age 50.

Causes Death in Multiple Sclerosis: Death rate is greatly accelerated in those who have progressive disability

  1.  Bronchopneumonia 55%
  2.   Septicemia 11%  
  3.  Myocardial infarction 15%
  4.   Documented pulmonary embolism 4%

Death rate  increases substantially when Secondary Progressive MS is diagnosed.

“MS is not fatal, but some complications which can arise from more severe MS, such as pneumonia, can be.” (NHS UK) (This statement makes reason stare)

As a result, the average life expectancy for people with MS is around 10 years lower than the population at large.

A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced MS.”

Immobility due to MS can cause pressure or bedsores. Pressure sores usually begin with minimal problems but  left untreated  progresses  more serious infections including sepsis – basically a full-body infection caused, in the case of pressure sores, by bacteria entering via the open wounds. Many factors can contribute to pressure sores; they include immobility or inactivity, decreased sensation, bowel or bladder incontinence and poor nutrition. PwMS are more susceptible to colonized staph infections and MRSA than the general population for the same reasons.

 Other common infections which can lead to life-threatening consequences include recurrent and severe urinary tract infections (UTIs) it is not uncommon for those predisposed to UTI infections to have great difficulty in curing them. Some people have ongoing infections in the urinary tract that eventually infect the entire urinary system. Kidney disease and failure often follows. Antibiotics, the normal first line of defense, becomes the problem as the body builds a resistance to them calling for more potent and broader spectrum antibiotics. There have been no appreciable developments in the development of better antibiotics in several decades. MRSA has become a problem worldwide with no overall or comprehensive accepted or treatment.

Dysphagia – or swallowing problems – can cause food or liquid to be aspirated into the lungs. The body reacts with  inflammation and fluid accumulation  leading to pneumonia and respiratory failure.

The reported rates of a person with MS committing or involved with assisted suicide has risen from 6% 10 years ago to 15% in 2011. Depression left un-diagnosed and therefore untreated is the number one cause.

Palliative care is a more comprehensive approach to healthcare. It involves the physical, emotional, social, and spiritual care of people with progressive MS. Palliative care should be provided by a team of doctors, nurses, and other specialists who work to provide for all of the needs of the MS patient and their families. Fear of the future and quality of life are by  the biggest concerns I hear every day from PwMS. Palliative care is not synonymous with hospice care, though it often turns out that way. The goal should not be to make one’s passing easier, but a concerted effort to locate and provide the best medical care as well as a means to cope with everyday life. It is as important for those receiving treatment for curable diseases or progressive disability as it is for those facing end of life decisions. There is no cure for MS any more than there is a cure for growing old. That doesn’t mean that recovery and a diminished QOL are  forgone consequences.

CCSVI, Vitamin & Mineral deficiencies, skeletal misalignment, Lyme Disease,are a few but treatable aspects of MS.Image

Lesions and Lies

Those who are bedazzled with the medical jargon of their neurologists do themselves a disservice. They count and assess brain and spinal lesions like pennies dropped one by one into a piggy bank. After all, monetary compensation is the major motivation for MS care providers in general. Ask them to,explain brain and spinal lesions and be prepared for a smorgasbord of nonsensical medical verbiage and doublespeak that is second to none; bring a lunch and take notes.

Lesions are part and parcel for MS. There is little question that neurological damage can occur. They are caused by the reflux of iron into the brain due to impaired blood flow. In “normal ” people blood drains easily from the brain back to the body.This fact stares in the face of the currently accepted cause of Multiple Sclerosis.

To my knowledge there are only a handful of neurologists in the world who accept the fact (at least publicly) that lesions are not caused by a faulty immune or over active immune system. If your neurologist tells you that you need to take disease modifying drugs to manipulate your immune system and you believe that line of reasoning then there is little that anyone else can do for you. I’m speaking to every one in general not an individual.

Unless or until normal blood flow can be restored, it is likely that damage will progress. There are many ways to treat CCSVI. We in this group have identified approximately a dozen or more reasons why we have the symptoms we have identified and a laundry list of things to do to improve our health.

The most common and accepted belief is that our options in health care are limited to the choices our doctors make. As long as we are willing to adhere to protocol dictated by governments, HMO’s, insurance companies, drug companies, and organizations such as the Multiple Sclerosis Societies, nothing will change, including our inability to acquire a quality of life we deserve and they take for granted. We are like a willow in the wind leaning in whatever direction the wind blows. They are the ones who manipulate the breeze .

For over 4 years groups of like minded people have fought to change the status quo with varying degrees of success. People who do not have MS as it is defined for us by the powers that be, are observers and dictators. We are the observed and subservient . We do not have the political, professional, legal, or financial resources to balance that of the aforementioned. Canada leads their people by the nose with promises to placate them into compliance. People in the UK have been totally ignored without the benefit of any promises whatsoever. The United States appears to be the only country where the people are free to choose a wider variety of health care options. Looks can be deceiving. The US government’s coercion is simply more subtle.

Progress has been made on a small scale. Unfortunately it has been of benefit to a somewhat limited number of people. MS is hardly the lone bastard disease bereft of fair representation and treatment. It merely seems that way to the people who own it.

Food for thought:

(This is an excerpt from a blog I wrote about the growing conflict in the clinical diagnosis of Multiple Sclerosis and how it relates to CCSVI,  trauma,Chlamydia pneumoniae,vitamin and mineral deficiencies and other causal factors in both MS and  CCSVI.)745056-fig2Probiotics_Info_from_siteshapeimage_9SpirochetesEx2[1]

Now that Lyme has become a hot topic, people are demanding better testing facilities. A fair number of people previously diagnosed with MS have learned they have Lyme Disease. That is another factor in the growing suspicion that MS as it is globally defined, is not a disease at all but rather a term used to pigeon hole people into a generic box of symptoms. Interestingly enough, some of these people also have CCSVI and been treated successfully with angioplasty.

This has been a fascinating puzzle for me but I have finally come to make some sense of it. Most venous anomalies are congenital, not to be confused with hereditary. Ten people can be bitten by ticks who harbor the spirochetes that cause Lyme disease. Statistically speaking less than half of them will actually develop the disease, other health issues not withstanding. We are beginning to get a clearer picture of “MS” with in depth review of the facts we have learned about CCSVI over the past several years. The narrow view that CCSVI is confined to PwMS has been blown out of the water. Some patients with other neurological disorders such as chronic fatigue syndrome, fibromyalgia and Alzheimer’s disease meet the criteria for CCSVI also. It’s no wonder that people are confused by the diverse laundry list of symptoms among those in the MS community.

“Stay hydrated”..RIGHT, leave me alone!


“Stay hydrated”..RIGHT, leave me alone!

Drink even if you think you aren’t thirsty: if you feel thirsty, it means you are already dehydrated and your body is trying to let you know. Of course PwMS may not get that message from the body to the brain, so keep a water bottle or wine skin attached to you, your bike, car etc.

Go to any CCSVI website and the words”keep hydrated” or “drink plenty of water” will be on every page or close to it. I use to think I was a little OCD about hydration until I met Daryl. Seriously, even many of us who have had the procedure are tired of hearing about it. The truth is that it is not simply a good idea, or necessary: it is critical that we stay hydrated. I am one of the lucky ones who can tell quickly when I become dehydrated. Some people have not been as fortunate. Feeling thirsty is a sign that you are not keeping ahead of the need for drink.

 Due to my own severe heat intolerance I also have hyperhidrosis (profuse sweating). If you are picturing a large person with a dirty tee shirt and huge armpit sweat marksyou have the wrong picture. As long as I keep my core temperature under the red zone, I look like any other old lady on the smallish size. It takes much planning and cooling equipment, as well as an up to the minute means of weather information. An individual can be severely dehydrated, particularly in the summer, and not be aware of it until it becomes a medical emergency.. It doesn’t matter if you are in constant A/C or not. People can sweat as much or more during as they do in the summer. It is quite possible to lose even more fluid during the winter months under all the flannel and knickers. Dehydration can and will be a catalyst for restenosis.

Walking in public places, church, meetings etc. can be embarrassing if you let it. I don’t. My health is more important to me than the “drinks are not allowed” signs in many businesses. Try to bring your sippy cup into the theater and see what happens. They all have “no dogs allowed” signs also. Well there are exceptions to every rule. The ADA allows access to service animals who are trained and certified to accompany disabled people in grocery stores, airplanes or any other building or facility open to the public.The law also makes allowance for the disabled to have “handicapped only” parking spaces. Of course enforcing the law in both the above situations has been a nightmare for many of us. I have  lifetime handicap license plates and 2 placards for cars in which I am a passenger. My service animal has all of her papers and certification on a laminated card I take with me everywhere she goes. (BTW in the US you don’t have to show any paperwork to anyone but it saves a lot of confrontation opportunities from ruining your day.)

So what do we do if we have to use other medically necessary non-traditional aids? You have options.   You can explain quietly that you aren’t trying to stiff the theater for the price of a Coke. That rarely works. You can carry a large purse but eventually you have to take the bottle out and actually use it. You can appeal to their compassionate side and explain your situation. That works at least 10% of the time. You could also have your doctor sign a “medical necessity” form. That option works for me. Should this all be necessary? In a word,hell no! (Ok two words) But we all know the crap we have to put up with when it comes to the rights of people who are handicapped, disabled or otherwise not the “average” citizen; whoever that may be, I haven’t met one yet. What we are talking about here is not setting up a wet bar in the county courthouse. We are talking about an unobtrusive innocent container of water.

I have written 7 or 8 blogs about how to beat the heat from absolutely free to $1000.00 & up. Since I have to wear a cooling vest, sometimes even in winter, I do what I must. If I needed a portable oxygen tank, I wouldn’t be as concerned about etiquette as I would be about passing out from low O2 stats.

Heat intolerance may lead to heat exhaustion under severe circumstances. If you experience signs of heat exhaustion or heat stroke, you may need to seek emergency medical treatment. These symptoms include:

•             Confusion

•             Loss of consciousness

•             Vomiting

•             Muscle cramps

•             Body temperature of 104 F or higher

•             Elevated heart rate

•             Rapid breathing

Some doctors may tell you that is heat intolerance is merely an inconvenience. However MS induced heat intolerance can result in heat exhaustion and stroke just like anyone else out in the sun too long. We don’t have to be in a scorching desert; a warm room can do the trick. Heat stroke can be fatal.

If you have MS, heat intolerance can lead to problems with your vision. This can range from blurred vision to temporary loss of vision. An increase in body temperature amplifies the distortion of your body’s nerve signals in those with MS. This is referred to as Uhthoff’s phenomenon.

What to do?

Stay hydrated and keep cool.There are a myriad of different cooling methods.


v  A cooling vest with a liquid Cooling System has been proven to be the most effective, affordable portable personal solution to heat stress. This is not a vest you soak in water which becomes slimy, can’t be worn under other clothing and doesn’t perform well in high humidity. This is not a vest with packets of frozen liquid that are bulky, heavy and quickly lose their effectiveness. This is a vest that is lightweight, breathable and uses NASA-developed technology to cool you with chilled water circulated through a network of microtubing. It costs a little more, but it works much better. Cost: approximately $500.00

This is the system I use:



v  An ice vest with packets of frozen gel is much cheaper and fine for most people. An extra set of gel packs is very convenient. You can have one in the freezer a while using the other.


$35.00 & up



v  Wrist wraps

v  Bandana cost: $10.00

v  Evaporative gardening hat: cost: $20.00



v  Make your own cooling vest:

Cooling neck wrap


v  One yard of 36″ wide tan cotton muslin will make 9 neck coolers. “Magic Crystals” are the watering crystals you put in the soil of your potted plants. “Moisture Plus” and “Soil Moist” are two brand names.  It is NOT vermiculite or perlite! These tiny beads absorb up to 100 times their weight in water, and swell  with the water a then give it off slowly to the plants, or to a hot neck in our case. They can be found in the garden department of discount stores, or garden centers. One package will make MANY neck-coolers.


v  Cut the muslin into 4″ wide strips (by 36″ long). Fold lengthwise and sew across the short (selvage) end, and down the long side, using a fairly short stitch length. Leave the other end open. Turn the tube right-side out. A pencil makes this step fast and easy. Press flat.


v  To contain the crystals in the middle section of the neck cooler, sew a line across the tube about 10″ from the stitched end. Spoon just 1/4 teaspoon of crystals into the open end and make sure that they slide down to your sewn line. Sew another crosswise seam about 15″ from the first seam, to contain the crystals. Finally, just stitch the open end closed.


v  (NOTE: since crystals vary in size by manufacturer, make ONE neck cooler as a sample first, soak it for 10 to 12 minutes, to determine the correct amount of crystals to use. The fully expanded crystals should fill the tube, and not burst the seam! The tube must be able to BEND enough to be tied around the neck!)


v  One note of caution: You will be tempted to add more crystals, thinking that more is better. However, these crystals swell A LOT. (1/8 tsp swells to about 1/3 cup of gelatinous balls).

v  Soak the collars in water for 8-12 minutes until they swell and then tie them on, The crystals eventually wear out and will not absorb as much water. However, they should last a month or two.


 To use your neck cooler, soak the middle of the cooler in water until the crystals in the middle bulge. The first soaking may take as long as ten minutes before the crystals absorb as much water as they are capable of. You can then tie the neck cooler around your neck. The crystals will slowly give up their absorbed water and the evaporation of the water should cool you for hours. The neck cooler can be re-soaked and used again and again. It should last about two months before the crystals lose their ability to absorb water.


Other Strategies:


v  Get a cheap spray bottle – fill it with water, adjust it to fine mist and spray it on your exposed skin for an instant chill-zing cooling effect.

v  Keep the back of your neck in shade (wear a cap backwards, or raise your collar) or put a wet handkerchief on the back of the neck. The sensor for our body temperature control system is in this area, and so with this method you can make the rest of your body think that you are “cool”.

v  Place or tie an icepack behind your head.

v  Wet all your hair, or just all along the hairline in a pinch. The evaporation of the water will cool your head (though it may make your hair a bit frizzy if it’s curly!).

v  Wear a bandana with water soaked in it and put it on your head. Or you can relive the 80′

v   Water misting fan. These portable devices are battery operated so you can take them with you wherever you go. As you mist and fan yourself, the water is evaporated on your skin, giving you an instant cooling sensation.

v  Soak a t-shirt in the sink, wring it out and put it on. Sit in a lawn chair (or other chair that lets air through to you) in front of a fan. Re-wet as it dries. Use lukewarm water for this so you don’t “shock” your system with cold water.

v  Wear a short sleeved shirt and put water on the sleeves only. If there is a breeze or fan blowing on you, you can actually get cold! Use a squirt bottle, the sink or hose if outside to keep your sleeves wet. If you are outside and wearing long pants and you put water on your legs, the water will cool your legs. Long skirts are also good for this. Just sprinkle the hemline with water.

v  Run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour.

v  Soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids wading pools are great for adults feet too.

v  Fill your bathtub with cool water and get in. Once you are used to the temperature, let some water out and refill with cold water. Keep doing this until you are sufficiently cold. Your body will stay cool for a long time after you get out. For a fast cool-down, add ice!





v  Wear nothing. (or as we say at our house, “ run around nakie” .If you’re in a situation where you can go without clothes, this can be the most comfortable and natural way to stay cool.

v  Wear next-to-nothing. Put on a swimsuit, or wear your underwear at home.

v  Wear summer clothing. Wear loosely-woven natural fabrics (cotton, silk, linen) rather than polyester, rayon, or other artificial fibers (with the possible exception of performance fabrics).

v  Wear light colors. Darker colors will absorb the sun’s heat and stay warmer longer than light or white clothing, which reflects light and heat. Wear natural summer clothing.

v  Cover yourself up. Covering up may actually keep you cooler, especially if the heat is low in humidity. In the scorching temperatures of the Middle Eastern deserts, traditional cultures wear clothing covering from head to toe. By protecting your skin from the sun beating down, you’ll also shade your skin. Be sure your clothing is made of natural fabrics and loose-fitting.



v  Lie on the floor. Warm air rises (since it’s less dense than cooler air) so it’s layered on top of the downward moving cooler air, which sinks lower. If you’re in a house, for example, stay lower than the warm air. Make your way to the basement or lower level. It will be coolest near the floor on the ground level.

v  Snorkeling system. Take a glass and fill it almost to the brim with ice cubes. Hold it up to your mouth and blow gently into the cup. The ice causes the air you are blowing into the cup to cool down drastically, and since the air only has one way out of the cup (the hole which should now be aiming right at your face) the cold air is forced out over your skin.

v  To put the “snorkeling system” to more efficient use, point a fan into a square of four cups filled with ice water and ice cubes. The cooler air in the cups have no where to go but out. Each night, refreeze the cubes and open the windows instead.

v  Sit in the shade. Find a shaded area and set up a water misting system that connects to an ordinary garden hose that can be found at home improvement stores. Sit there and let the mist cool you off.

v  Avoid peak sunlight hours. Take a cue from people in extremely hot climates and avoid going out between 10 a.m. and 3p.m., when the sun’s rays are hottest. You’ll also avoid a sunburn this way.

v  Close your blinds. Shutting your blinds and curtains during the day will help block the sun’s heat. As soon as the sun hits your building in the morning, close all windows and keep exterior doors and windows closed throughout the hottest part of the day. Do this until night falls and it’s cool enough to open the windows for the night.

v  Open the windows at night. Open selective windows so that cooler night air is blowing in throughout the evening. Leaving all interior doors open (including closets and kitchen cabinets) helps, too. If you leave them closed, they store the daytime heat and your house won’t cool off as much at night.

v  Cool down your house with fans. Position a ceiling fan, an upstairs window fan or an attic fan to draw off the heat collected in upper rooms and push the heat outdoors. Set up your portable fan so that the fan sucks up cooler air from the floor below, and blows hot air upwards towards the ceiling.

v  Make a DIY air conditioner. Put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice. Or, use one or more 2 liter bottles and fill them mostly full of (water – 70%) & (rock salt – 10%) (air – 20% for expansion) (the salt brings the temp of the frozen water down to a lower ºF), freeze them, then place them in a large bowl (to catch dripping condensation). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.

v  Turn off all heat sources. Don’t use the stove or oven to eat. Eat cold food, or use the microwave. Incandescent light bulbs also create heat – switch to compact fluorescents or LEDs. Turn off your lamps and your computer when you’re not using them. You should also turn off your TV since it gives off a lot of heat, as well as some plug-in power adapters.

v  Avoid steam. During the day, don’t take a hot shower, wash dishes and clothes or cook until after dark. Make sure your pot lids are tight-fitting. Make sure the door gasket seals on your oven, washer and dishwasher are in good shape and have no breaks or rips.

v  Adjust your pilot light. If you have a gas stove with pilot lights, make sure they are set correctly. If they are set too high, they will produce excess heat.

v  Put smooth white fabrics over anything in your house that’s fuzzy. For example, you could cover corduroy pillows with white satin pillowcases for summer, put linen slipcovers over wool sofas, or just throw white sheets over furniture. Light-colored fabric will reflect heat instead of absorbing it, and the smooth texture will give you an impression of coolness.

Okay what else?

v  Freeze a water bottle and keep it with you. Drink from it, or just put it on your skin.

v  In front of a fan (that is running) put a cup of ice. Stay in front of the fan and colder air will get to you.

v  Do not leave a fan on in an enclosed room when no one is present (unless it’s an attic fan). A fan does not cool the air already in the room; in fact, it heats it. The fan’s motor generates heat and even the circulating air creates a less significant amount of heat from friction. It just feels cooler when you are present because of natural moisture evaporation from the skin, which only cools your body if you are in the room. Save electricity and turn off all fans in enclosed rooms that are not occupied.

v  If your garage is under living areas of your home, leave your hot car outside to cool off before putting it in the garage.

v  If all else fails, go to the mall, library, church, movie theater or some other air-conditioned public building.

v  The early morning and evening are usually cooled down enough to enjoy your walk, run, hike, bike, gardening, or yard work.

v  During a heat wave, many towns and cities open up air-conditioned “cooling centers” in nearby schools and community centers, and will help you reach them. People with MS (or other medical conditions) can call their local government services for a list of cooling centers.

Dysautonomia and MS/CCSVI Part 1


Dysautonomia is a medical term used for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. This means that the automatic things your body always does may not be happening so well.

 Dysautonomia is a dysfunction of your autonomic nervous system. Obviously, the autonomic nervous system is very important to our bodies. The heart, stomach, intestines, blood pressure, body temperature regulation, endocrine system (glands), pupil dilation, and muscles (in the skin, around blood vessels, in the eye, stomach, and in the heart) are all controlled by the autonomic nervous system. A malfunction of this system impacts every organ of the body. Most of the time we are unaware of our autonomic nervous system working in its usual “involuntary” manner. It controls our systems automatically and we usually take it for granted. It works 24/ so we don’t have to rely on reminding our hearts to beat for instance.

Some patients develop symptoms after a viral illness, immunization, or trauma. Vaccines play a larger role in chronic illness than is generally known. Children may have symptoms after a growth spurt, common in early teens.

Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families.

When we stand up – gravity pulls about 1/3 of our blood to the lower part of our body. Then our autonomic system responds and immediately tells our brain we are standing up and to do three things:

  1. make the heart beat faster
  2. increase the force of the heart’s contractions and
  3. tighten blood vessels in the lower part of the body to about three times it’s previous tightness.

The effect forces  blood from the lower half of our body into the upper half. Then, our blood pressure regulates properly and we are good to go.

In some people with dysautonomia the brain does not get these messages correctly and their blood stays in the lower part of their body and then their blood pressure drops and their heart rate increases.

Low blood pressure has nothing to do with our intelligence or how smart or clever we are. It can cause cognitive dysfunction such as short term memory loss .It affects their ability to think clearly and to concentrate. This impact on concentration is usually brief or transient.

Some people are overwhelmed by their symptoms and have to lay down all the time. The heart rate often shoots up as the body responds to a drop in blood pressure. This can be the cause for a lot of tiredness and fatigue and generally feeling washed out.

It is often difficult to see the symptoms of dysautonmia. A general physician sometimes misses the clues leading to a proper diagnosis. Cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia children. Sometimes neurologists get involved though personally I wish they didn’t. Research is being done at the Cleveland Clinic, Johns Hopkins, Mayo Clinic, Medical University of Ohio, National Institutes of Health, NY Medical College, Vanderbilt Medical Center and others. It is exciting and revolutionary, and there is tremendous hope on the horizon. Tragically, there are also extremely rare fatal forms of dysautonomia but this is not at all common in children.

The average person may have never heard of dysautonomia before, but progress is being made in this field of medicine every day and word is getting out. With time and awareness, more and more people will start to understand the various forms of dysautonomia and more and more people will know what it is. Thanks to medical science and compassionate physicians and researchers, there is tremendous hope.

For additional information on the history of dysautonomia:

Dysautonomia: A family of misunderstood disorders



Symptoms of dysautonomia may include:


  • tachycardia (extremely fast heart rate)
  • bradycardia (slow heart rate)
  •  palpitations
  • chest pain
  • dangerously low blood pressure
  •  wide swings/sudden drops in blood pressure
  • orthostatic intolerance (the inability to remain upright)
  •  excessive fatigue
  •  exercise intolerance
  • Dizziness
  • Fainting
  • near fainting
  • gastrointestinal problems
  • nausea
  •  insomnia
  • shortness of breath
  • anxiety
  • tremors
  • frequent urination
  • convulsions
  • cognitive impairment
  • visual blurring or tunneling
  • migraines

Hughes Syndrome diagnosed by a simple blood test remains dangerously under-diagnosed.

Antiphospholipid syndrome is an autoimmune condition (APS or APLS ) or Hughes syndrome, also known as “Sticky blood” is commonly misdiagnosed as  MS.  The person’s immune system produces antibodies which attack proteins and fats in the bloodSome people with Hughes develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. One of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis.


People with it have an increased tendency to form clots in blood vessels; any blood vessel can be affected including the veins and the arteries. Deep Vein Thrombosis like “economy class syndrome” is obvious. It is common in people who sit for long periods of time in one position .Sitting in front of the computer or taking long flights are two good examples. Clots which occur in internal organs, the condition is more difficult to diagnose. It is possible to have the antibody (the sticky blood ‘tendency’) without any noticeable symptoms.


Headaches or migraines sometimes start in teenagers .The headaches may disappear in the 20’s and return and start again 10 or 20 years later. This is a most important feature of Hughes Syndrome, and a symptom which sometimes improves dramatically when treatment is started. Flashing lights is common in these headaches.

The brain is sensitive to “sticky blood” which can affect oxygen supply which causes balnce problems. Many patients feel giddy or slightly drunk.


Memory loss or cog fog occurs with hypoxia (oxygen deprivation). It can feel like Alzheimer’s disease. The person may forget the names of family members, friends, appointments, etc. Speech can sound slurred. Blood thinning can dramatically resolve the cognitive problems of Hughes syndrome.

In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected. Poor circulation can make the skin cold to the touch and cause ulcers and “corned beef” looking discoloration.DVT’s can occur anywhere in the body at any time. Birth control pills can exacerbate the problem.

Hughes Syndrome can lead to heart attacks and heart valve problems that can mimic bacterial endocarditis, and can create clots in the upper chambers of the heart. Up to 20% of young people (under 45) who have a heart attack have antiphospholipid antibodies.


1 in 5 “young” strokes under the age of 45 are associated with Hughes Syndrome. These are preventable with a simple blood test to confirm Hughes Syndrome.  

Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice dark urine and the swelling of the abdomen.


1 in 5 miscarriages are caused by Hughes Syndrome. Late pregnancy loss is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction. The sad part is that it is preventable with low dose aspirin or heparin.


The main symptoms of Hughes Syndrome can include any of the following:

  • Multiple Sclerosis-like symptoms
  • Headache or migraine  
  • Giddiness
  • Memory loss    
  • Visual disturbance
  • Skin disorders  
  • Thrombosis – DVTs
  • Heart attack      
  • Stroke
  • Pulmonary embolism   
  • Gastrointestinal disorders         
  • Pregnancy problems
  • Fatigue
  • Aches and pains
  • low platelets counts
  • raised blood pressure
  • Dry eyes (Sjogrens’s Syndrome)
  • shortness of breath
  • pulmonary hypertension
  • terrible cramps of the stomach that develop about an hour after eating Image

Cognitive Issues & Treatments for PwMS/CCSVI

I wrote this 4 years ago. Since then I realize that some symptoms of cognitive dysfunction were omitted. Perhaps I did so purposely because they may have hit too close to home. At the conclusion of the five year clinical study for CCSVI in which I took part, I was given the privilege of reading some results that I have given much thought to since August. Cognitive issues MS/CCSVI or what ever you have chosen to call our condition included are far more complex than I realized. It is my intention to address this issue in greater detail as I prepare a video and article which will chronicle in greater detail my almost 20 year journey through MS.

Of the 50 various MS symptoms I had, cognition, cog fog, MS brain farts, “old timer’s” disease or what ever else you want to call it was by far the most crippling and self-esteem destroying hell I have ever lived through. I have made a few observations:

Cognitive impairment occurs when problems with thought processes occur. It can include loss of higher reasoning, forgetfulness, learning disabilities, concentration difficulties, decreased intelligence, and other reductions in mental functions.

If either memory, or thinking were somehow disrupted, then our ability to process information would be impaired.

Some treatments that have proven to be effective in some people

ACETYL-L-CARNITINE: 1500-4000 mg daily (caution: do not take with blood thinners like Warferin)It also improves blood flow which makes sense for PwMS/CCSVI

  • CITICOLINE: Age-related memory problems. Citicoline seems to help memory loss in people aged 50 to 85 years.
  • Stroke recovery. Stroke patients who take citicoline by mouth within 24 hours of having the kind of stroke that is caused by a clot (ischemic stroke) are more likely than other ischemic stroke patients to have a complete recovery within 3 months.
  • Long-term blood circulation problems in the brain (cerebrovascular diseases). There is some evidence that citicoline taken by mouth or given by IV or as a shot might improve memory and behavior in patients with long-term cerebro-vascular diseases, such as stroke.
  • PHOSPHATIDYLSERINE:  100 mg of phosphatidylserine three times daily.

Description of the how we use our cognitive skills:

  •  focus, maintain and divide attention (concentration)
  • learn and remember new things
  • think, reason and solve problems
  • plan, carry out and monitor our own activities
  • understand and use language
  • recognize objects and assemble things together
  • judge distances (spatial skills)
  • Language processing, concentration and memory problems are the most common symptoms of cognitive dysfunction.
  • ‘Word Fishing” is a common complaint relating to language use, where the person knows what they would like to say but is unable to ‘find the words’.
  • Concentration may result in a person beginning a task, becoming distracted by another but beginning the new task before finishing the first, and so it goes on and on, until there are numerous unfinished chores or tasks.
  • Memory problems too, present a challenge for people with multiple sclerosis, particularly short term memory. This tends to show itself as a failure to remember basic things such as the name of a familiar item or animal, for example.
  • The range of cognitive dysfunctions which can be associated with multiple sclerosis:
  • Verbal fluency and language skills can be impaired
  • Intellectual reasoning can be impaired
  • Inability to learn quickly
  • Poor problem solving abilities
  • Information processing can be slowed
  • Poor concentration
  • Poor judgment
  1. 1.       The majority of people with MS/CCSVI are/were multi-taskers. Someone who can dovetail their projects and complete them is usually is an “A” personality. 10% of people with multiple sclerosis, the impairment to their cognitive functioning will eventually become severe enough to significantly interfere with daily living.
  2. The ones who multitask are the most likely to suffer from cognitive problems. (This is not written in stone, however)
  3. When a brain cell dies, it does not regenerate, it is gone. The brain being the marvelous work and wonder that it is can compensate for a considerable amount of cell death. Even with no formal retraining the brain will often pass the cerebral baton to another part of the brain and learn to compensate for tissue degradation elsewhere.
  4. It is wise to prepare the brain to “cross train “ before the time it becomes a necessity.
  5. A person with MS can develop this symptom at anytime. You may go for ten years with little or no cognitive issues and then find yourself wondering what year it is.
  6. Cognitive problems usually occur over time. Since the person developing the problem may only have a vague feeling that something is wrong, it is often a friend or c0-worker who mentions your changed sense of awareness.
  7. Cognitive impairment may accompany symptoms related to infection including:
  • Fever
  • Headache
  • Malaise or lethargy
  • Muscle twitching, spasms or seizures
  • Nausea with or without vomiting
  • Rash
  • Stiff or rigid neck

BTW: other causes of cognitive problems are:

  • chromosome abnormalities and genetic syndromes,
  • malnutrition
  • prenatal drug exposure
  •  poisoning due to lead or other heavy metals
  • hypoglycemia (low blood sugar hypothyroidism (underactive thyroid), complications of prematurity, trauma or child abuse such as shaken baby syndrome, or oxygen deprivation in the womb or during or after birth

Cognitive impairment that develops in childhood or adolescence can result from many conditions.

  • Examples include side effects of cancer therapy,
  • malnutrition
  • heavy metal poisoning,
  • autism (abnormal development of communication and social skills), metabolic conditions
  • systemic lupus erythematosus (disorder in which the body attacks its own healthy cells and tissues)

With age, other conditions such as stroke, dementia, delirium, brain tumors, chronic alcohol use or abuse, substance abuse, some vitamin deficiencies, and some chronic diseases may cause cognitive impairment. Head injury and infection of the brain or of the covering of the brain and spinal cord (meninges) can cause cognitive impairment at any age.

Cognitive impairment may accompany other symptoms related to metabolic disorders including:

  • Abdominal pain
  • Abnormal heart rhythm such as rapid heart rate (tachycardia) or slow heart rate (bradycardia)
  • Changes in skin
  • Confusion or loss of consciousness for even a brief moment
  • Difficulty breathing or rapid breathing
  • Nausea with or without vomiting
  • Fatigue
  • Feeling very thirsty
  • Frequent urination or decrease in urine output
  • Fruity breath
  • Muscle weakness

8.Cognitive impairment may accompany symptoms related to other problems, such as injury, stroke or dementia. These symptoms may include:

  • Change in sleep patterns
  • Changes in mood, personality or behavior
  • Confusion or loss of consciousness for even a brief moment
  • Difficulty with memory, thinking, talking, comprehension, writing or reading
  • Impaired balance and coordination
  • Loss of vision or changes in vision
  • Nausea with or without vomiting
  • Numbness, weakness or paralysis
  • Seizure
  • Severe headacheImage

Baclofen & other Anti-Spasmotics versus Magnesium

Muscle Spasticity & Baclofen:


Baclofen and Zanaflex are two medications prescribed every day for muscle spasticity or spasms and tremors. They both can relieve this frustrating MS symptom but long term use can cause the muscles to weaken and become flaccid.

Baclofen is a muscle relaxant that works by inhibiting the reflexes at the spinal cord level.  It is not selective for just hyperactive reflexes, however.  It inhibits or depresses many aspects of the central nervous system.  As a result, it can be effective at reducing severe muscle spasticity, but it also produces common side effects such as drowsiness, dizziness, slurred speech, and confusion.  New, long-term side effects revealed by several studies are muscle weakness and fatigue.

Use of baclofen with other drugs that also depress the function of nerves may lead to additional reduction in brain function. In addition to the risk of depressing brain function, the use of baclofen and tricyclic antidepressants ( amitriptyline ,Elavil, Endep, doxepin Sinequan, Adapin together causes muscle weakness. Low blood pressure is another side effect to consider even short term.


Diabetics will need to make adjustments in their glucose control as baclofen can substantially raise blood glucose levels.

Baclofen may cause drowsiness, weakness, dizziness, headache, seizures, nausea, vomiting, low blood pressure, constipation, confusion, respiratory depression, inability to sleep, and increased urinary frequency or urinary retention. It is well known that too much anti-spasmadics can lead to muscle atrophy. One recent study showed that 27% of patients who used baclofen for over 1 year developed muscle atrophy , primarily in the calves and thighs.



 There are safer alternatives. Magnesium is an OTC supplement that can reduce muscle spasms. Magnesium has been used widely for clinical manifestation of muscle cramps, with good success. Research has shown that it is not just deficient individuals that benefit from supplementation, rather it has been hypothesized that everyone can benefit from its ability to stabilize cellular membranes. Magnesium is critical to cellular functioning in terms of energy production, cell reproduction, and protein formation. It is essential for energy production. A blood test is needed to determine the blood magnesium level before starting magnesium supplements. If the blood level is low or even normal, then body magnesium stores may be low. Unfortunately, a normal blood level does not ensure that body magnesium stores are adequate. The RDA is below what the body needs to relieve spasticity. Too much can cause diarrhea. For people taking medications to relieve MS symptoms, that could actually be a plus as many of them cause constipation.


Because of the effectiveness of magnesia and muscle cramps it is often given in the doctor’s office intravenously.

Magnesium is an important element in the body because it activates or is involved in many basic processes or functions, like:


1. Cofactor for over 300 enzymes;

2. Oxidation of fatty acids;

3. Activation of amino acids;

4. Synthesis and breakdown of DNA;

5. Neurotransmission;

6. Immune function;

7. Interactions with other nutrients, including potassium, vitamin B6, and boron.

500 mg three times a day is a reasonable dosage, however the blood testing should be done first.


CAUTION: Abrupt discontinuation of oral baclofen may cause seizures and hallucinations. Abrupt discontinuation of intrathecal baclofen may result in high fever, rebound spasticity, muscle rigidity, and muscle breakdown that can progress to failure of several organs, including the kidney, and even death. If you are taking Baclofen regularly you have to taper off not try to do it cold turkey. In the meantime, the magnesium can be stared before you discontinue baclofen. 


Magnesium information:

In a recent study analyzing the diet of 564 adult Americans, both male and female, the average intake of magnesium was less than two-thirds of the RDA for men and less than 50% of the RDA for women. This means that men, on average, are getting under 200 mg. magnesium daily and women get under 150 mg. per day. When you take into consideration the current RDA is less than half of the probable adequate amount of magnesium you begin to see the scope of the deficiency problem.


How to Take Magnesium and What Kind of Magnesium to Take:

SPECIAL NOTE ON CALCIUM- High calcium intake may block uptake and utilization of magnesium. Current available research seems to indicate that calcium intake be twice than or equal to magnesium intake. In spite of publicized research proclaiming high calcium intake as a positive health factor, in-depth review of research shows that high calcium intake contributes to many degenerative diseases and is a health risk factor.

IMO magnesium chelates as the only reliable sources to replete magnesium. Magnesium is available in chelated (bound to) combinations such as alpha-ketogluconate, aspartate, glycinate, lysinate, orotate, taurate and others. Inorganic or ionic magnesiums include sulphate, oxide, citrate, carbonate, bicarbonate and chloride. Some supplement companies make so-called chelated magnesiums but the chelate (bound to) is partial and the raw material contains some percentage of ionized, unbound or inorganic magnesium. Ionized magnesium may cause diarrhea in many users and, therefore, not correct a cellular magnesium deficiency. Diarrhea, or soft stools, caused by any form of magnesium can make a magnesium deficiency worse.


The best food sources of magnesium are chocolate, nuts, seeds, and deep, dark, leafy greens.


Magnesium should be taken with your other supplements and/or food. Split your supplemental intake into 2 or more doses daily. Some magnesium supplements can be energizing and in some persons may have a negative impact on getting to sleep and staying asleep when taken near bedtime. If taken in the correct dose and early enough in the day magnesium often corrects insomnia. Taking  magnesium late in the day is not a problem if it does not adversely affect your sleep.