MS/CCSVI is not confined to young adults and the middle aged.

MS is not confined to young adults and the middle aged:
There are many chronic, progressive and disabling diseases and conditions documented throughout the medical world. This group is most familiar with MS/CCSVI. The majority of people experience their first symptoms between the ages of 20 and 40. Some are not properly diagnosed for many years. Others do not have MS at all but rather have similar symptoms unrelated to this enigmatic condition. It is interesting that more people have been given a diagnosis of MS within the last decade than in the several decades before. In the past five years the patients I have spoken with feel that MS is not caused by one singular factor. I tend to agree with that assertion. The term “Multiple Sclerosis” literally means many scars, referring I assume to the brain and spinal lesions most MS’ers share to one degree or another. Neurologists count, measure and theorize over these lesions more than all other symptoms combined. “Lesion watching” as I call it seems to be almost a hobby for many doctors and patients alike. I don’t discount their importance. Their presence however can be observed in a great number of conditions. Number and size is much less important than their location. Not only can they continue to increase in number while in any given individual taking disease modifying drugs, they may shrink also. The explanation for this is usually suspect because it occurs in those who decline MS drugs in almost equal numbers.
Most of us are informed to a greater or lesser degree that congenital, genetic, and trauma based vascular anomalies is likely the most viable common denominator. We can also add vitamin and mineral deficiencies, genetics, environmental factors, TMJ, trauma, Lyme disease, diet, life style and perhaps a dozen more factors. In my opinion, the most epic progress made in MS treatment is the realization that it is most unlikely that an autoimmune disorder is responsible for MS. The human body is designed to attack foreign bodies or substances that invade any of its unique systems. When this occurs, it is not an autoimmune disorder; it is the expected response of a well-functioning immune system.

Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) is a concept this group has been investigating for many years. I am certainly one of its proponents. Those who have achieved success with symptom control through well performed angioplasty procedures in addition to addressing the other issues just mentioned need no convincing of its authenticity and value in defeating MS progression. I firmly believe that other neurodegenerative disorders have some of the same causal factors.

To be given a diagnosis of MS at any age is devastating and difficult. Newly diagnosed individuals rightly fear for their futures as well as their loved ones. Especially tragic is when a child and his or her parents are suddenly confronted with the uncertainties of Multiple Sclerosis and the available treatment regimens. Though I have met and spoken with many adults, I have thankfully not dealt with very young adults and children. This recently changed when I met a 12 year old boy recently diagnosed with MS. He has several MS symptoms we are familiar with as well as Diplopia. Over the past 6 months his vision has deteriorated to the point that blindness will be inevitable. His neurologist prescribed treatment with steroids and Avonex. His parents have chosen another course. He will soon have an angioplasty procedure very similar to my own. None of us signed up for what we were dealt with this disease, but to a child and his family, it is especially devastating. I would like to keep those interested updated on his progress, one way or the other. BTW, his mother was diagnosed with MS two years before he was born. She is still RRMS but physically doing well.

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Not a Geek

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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-degenerative 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.”

 

http://engineering.columbia.edu/columbia-engineers-provide-new-insight-how-brain-regulates-its-blood-flow

How to regain Lower Mobility :Part I

It is a long hard road as each of us knows to regain lower mobility. As a person who suffered with foot drop and instability I know how difficult this can be. I became very defensive when my neurologist insisted I use a walking cane or “stick” as it is called in the UK. Independence and self assurance vanished in front of my eyes. After several falls and a fair number of bruises, my options were fading and the stick became my best friend during relapses. It hid in a closet during those wonderful months I was in remission. As disability worsened, again options had to be weighed: AFO’s or a wheelchair. The thought of not being able to stand and walk crippled me emotionally long before it became a physical reality.

When left sided weakness made it too painful and unwieldy to rely on my cane, I was fitted with AFO’s. My inner rebellious nature rose to the surface when I opted for a sleek set of AFO’s with a purple butterfly pattern. More thought about designer AFO’s could have prevented embarrassment as the realization that purple butterflies might not always be the best choice with much of my wardrobe set in. I had to choose between full length sticks with arm braces or a walker. I chose a rollater walker due to the increasing weakness in my left arm. The shoes I had to wear over these monstrous pieces of plastic looked like oversized clown costume affair. I was standing on my own, so to speak, in short order. One day I took a few steps toward my youngest daughter and we both had tears in our eyes over the accomplishment.

Soon I realized that the muscles in my legs were becoming weaker rather than gaining the strength my doctor promised. I was upright, but the constant support prevented any real improvement. At that time I was unaware that IV Solumedral therapy and the use of Baclofen for spasticity had caused muscle wasting and atrophy. These side effects are rarely explained to someone whose symptoms begin to disappear like magic during a relapse.

The AFO’s were relegated to the closet next to the walking stick. Pain, clumsiness and physical therapy replaced the romantic butterflies. Foolishly steroids remained my drug of choice to overcome many of my MS symptoms. Unaware that I had developed osteoporosis, I forged ahead with my walker. Drop foot caused me to kiss the dirt on many occasions. It’s nearly impossible to prevent a face plant once a full trip has taken place.

Battered and bruised, I remained stubborn and resolute. The local emergency room staff all knew me by sight. On one occasion I arrived with two black eyes, a swollen mouth, bloody nose and blood soaked shirt and designer jeans. I turned around in my carport, missed the only step in sight and landed face down on the cement floor. My jaw and nose were broken. I had deep cuts on my mouth, arms and legs. That’s a lot of damage to sustain while traveling zero miles per hour.

Though most of my adaptive and assistive equipment is long gone, I keep the AFO’s, walking stick and power chair to remind me of a time many people might choose to forget.

CCSVI May Not Be Our Only Vascular Problem

Chronic Cerebro Spinal Venous Insufficiency (CCSVI) is a causal factor in Multiple Sclerosis. Though conventional medicine still points to an autoimmune disorder it remains today an unproven theory. It is not my intent to argue those two theories at this juncture because my thoughts on the subject are well known and available to anyone interested in the subject. People in this group are aware of my recovery from MS/CCSVI and my feelings about the angioplasty procedure used to treat it. I believe there is a congenital component to the venous anomalies found during the procedure. Very few people I talk to disagree.

One important point I would like to address is the possibility of venous problems in other areas of the body which are not nor should be treated as part of the current venoplasty performed today for  CCSVI. It is only logical to assume that those of us with strictures, narrowings, faulty valves etc. as they relate to CCSVI might also be more likely to have similar anomalies elsewhere. Some people treated for this condition have also needed surgical intervention in their legs, feet, hands etc. After nearly 4 years of welcomed MS symptom relief I now find it necessary to be concerned about venous insufficiency in my legs. Neuropathy is common in MS/CCSVI as we know. I believe there is mounting evidence that we need to be vigilant in continual reassessment of the vascular system as part of our individual wellness campaigns.

Some of the people currently in the same study I am are turning to vascular specialists for similar problems after successful angioplasty. For those who have yet to be treated for CCSVI, it may not be a main concern at this time. For those of us who have had the procedure and still have lower mobility issues, numbness or neuropathy a consultation with a vascular specialist would be a prudent course of action. Fore warned is fore armed

.

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.

 

 

http://jnnp.bmj.com/content/50/5/523

http://jnnp.bmj.com/content/83/1/61.abstract

Vitamin K and CCSVI

Supplements are a hot topic for those of us with MS/CCSVI. Someone recently asked a question about Vitamin K as Terry Wahl’s recommends kale and other leafy green vegetables as necessary for a proper diet.

There are three types of Vitamin K:

1. K-1: this is found in leafy green vegetables like kale. It goes to the liver and helps control blood clotting.

2. K-2: this one is made by the bacteria in your gastrointestinal tract. Instead of the liver, it goes to blood vessel walls, bones and tissues.

3. K-3: is synthetic. It is potentially harmful and should be avoided. It can be toxic and is not the Vitamin K we need at all.

The important things to remember is that K-1 plays a part in blood clotting only. Kale is rich in K-1 and therefore a person with Hughes Syndrome (“sticky blood”) or CCSVI should limit their intake of leafy green vegetables. They do not have to be eliminated in your diet but shouldn’t be the mainstay of your diet.

K-2 is an essential vitamin that keeps bones healthy and arteries clear. It helps to prevent cancer, osteoporosis and heart disease.

It has been shown through a study published in the Journal Science 2 that Vitamin K-2 helps maintain normal mitochondrial dysfunction. This is found in Parkinson’s disease. I would think that fact alone would make it an important consideration for those of us with MS/CCSVI.

If you take Vitamin D-3, then you need to take Vitamin K-2 also. Interestingly enough people who have suffered Vitamin D toxicity were found to be lacking in Vitamin K-2. There have never been a report of K-2 toxicity.

Symptoms of Vitamin K deficiencies

• Nosebleeds,
• Abnormally bleeding gums
• Heavy menstruation
• Blood in the urine or stool
• A deficiency can also be caused by long term antibiotic use. Antibiotics can kill the bacteria I mentioned earlier in the gastrointestinal tract which produce Vitamin K-2.

Some causes of vitamin K deficiency are:

1. Cystic fibrosis

1. Chronic malnutrition
2. Celiac disease

1. Bariatric surgery

1. Removal of part of the intestines

1. Alcoholism

Some herbal creams help lighten redness caused by broken blood vessels and helps to prevent burn scars.

Linda Rousay

MS Classifications, Neurologists & DMD’s

Keep in mind that the authors of the current classifications of MS are neurologists. It has been changed over the years by the way.

1. Benign: (BMS) Mild infrequent sensory exacerbations with full recovery

2. Relapsing Remitting: (RRMS) Episodes of exacerbations and remissions where not all symptoms resolve completely. A person can have some permanent disability which may vary in severity. Relapses usually  more severe than in Benign MS. Relapses also become more severe with time.

3. Secondary Chronic Progressive: (SPMS) People with relapsing/remitting disease begin to gradually worsen over time with an accumulation of neurologic signs and symptoms. Relapses become more severe while remissions are less complete, shorter in duration, usually remissions stop all together. SPMS continues to progress steadily.

4. Primary Progressive: (PPMS)There are no relapses. The disease begins with a slow progression of neurologic issues. Problems appear and gradually worsen over time. Common problems include spastic paraparesis, cerebellar ataxia, urinary incontinence.

5. Progressive-relapsing: (PRMS). In this relatively rare type of MS, people experience both steadily worsening symptoms and attacks during periods of remission.

6. Progressive-relapsing  (PRMS)  This is a rare type of MS, people experience both steadily worsening symptoms and attacks during periods of remission.

Numbers 1&6 are controversial and some neurologists say they do not exist. Neurologists can’t seem to agree about many important points concerning MS. Causal factors, types & numbers of symptoms are two important ones. They do not however, have any difficulty pushing disease modifying drugs (DMD’s). Studies for these drugs are often skewed. It would be impossible for an acting physician to closely monitor what is happening with drug trials and studies. They are too numerous and the literature is daunting for even the most conscientious, experienced and well trained  doctors to wade through. Drug representatives are their main source of information. There are no specific educational requirements to become a pharmaceutical sales representative. All of the information they have about the drugs they peddle is what the drug companies tell them. The only real requirement is that they know how to look business like and have the instincts of a car salesperson.

Shouldn’t it bother everyone that their doctor may be prescribing medication for them based on the limited knowledge and  expertise of a non-medical sales rep? There are 82,000 working drug sales reps in the US alone. It is their job to quietly befriend doctors, keeping close track of which doctors take the free gifts and then determining which drugs the doctors later prescribe.

Our health-care system now is regarded as a business, period. Drug companies spend a great deal of money wining and dining physicians who prescribe their drugs There’s a wide range in value of the free gifts offered to doctors — from lavish trips to free Mother’s Day flower bouquets for doctors willing to hear a pitch about a new osteoporosis medicine. An exampthe yearly gathering of one of the most prestigious medical groups, the American College of Physicians. It was like a carnival: Doctors could be seen taking free massages, free food, free portraits, free Walkman players, free basketballs, and from one company pushing a new antacid drug, free fire extinguishers.Top drug makers  shower doctors with ethically questionable or illegal financial incentives to prescribe certain drugs. Research has found that these payoffs may influence doctor choices in ways that are not beneficial to patients — for example, getting doctors to use drugs for risky off-label uses that have not been approved by the FDA. More commonly, these practices have been found to increase healthcare costs by bribing doctors to prescribe more expensive drugs that aren’t any more effective than alternatives — sticking Medicare and Medicaid with the tab.

Pradaxa and CCSVI

Pradaxa is normally used for people with atrial fibrillation to prevent blood clots from this type of heart rhythm problem.  It is sometimes used for CCSVI patients post procedure even though Warfarin and other prescription anti-coagulants and/or blood thinners are less risky.  Pradaxa is being blamed for more than 500 deaths. Pradaxa is significantly associated with a higher risk of heart attacks and chest pain than Warfarin.

In January of this year, the Institute for Safe Medication Practice published a study that found Pradaxa bleeds were about 5 times more likely than Warfarin to result in death… that means a person taking Pradaxa is   500% more likely to die from a bleed than if they are taking Warfarin. There is no antidote if a Pradaxa patient starts bleeding.Vitamin K which is used in Warfarin incidents does not work for patients taking Pradaxa. At this time there are more than 1,100 lawsuits in federal court against Boehringer Ingelheim for adverse Pradaxa side effects. Of course this is only in the United States. Pradaxa use in the UK is rising.

Below I have listed supplements and foods that are used for their blood thinning qualities.

1. Vitamin B-6
2. Vitamin E
3. Omega- 3 Fatty Acids
4. Iron
5. Magnesium
6. Turmeric
7. Bromelain
8. Willow bark
9. Tree Ear
10. Jicama
11. Garlic
12. Onions
13. Olive Oil
14. Ginseng
15. Green Tea    

Salicylates help to block vitamin K. Aspirin is the most well known. Many spices, nuts, and dried fruits are high in salicylates.

Spices:

• Curry powder
• Cayenne pepper
• Ginger
• Paprika
• Thyme
• Cinnamon
• Dill
• Oregano
• Turmeric
• Licorice
• Peppermint

Fruits:

• Raisins
• Prunes
• Cherries
• Cranberries
• Blueberries
• Grapes
• Strawberries
• Tangerines
• Oranges

Other sources of salicylates:

• Chewing gum
• Honey
• Peppermints
• Vinegar
• Wine
• Cider

If you are taking Pradaxa after the Liberation Procedure, be sure that you are informed and understand the alternatives.