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HI
My name is Lucy// Dancing has been my life.................. I was diagnosed on Wednesday with Primary Progressive MS..
I feel like I have been hit by a freight train!!!!!!!!!!!!!!!!!
The doctor told me there is NO cure............!

I have been hearing about Dr Zamboni and his CCSVI, and also some stem cell work under research in USA.
I need help NOW!
Can anyone advise......... Please

hi lucy, we have all been there, that frantic time when first diagnosed. it is terrible i feel for you.

unfortunately everything takes time. very smart to start by reading, getting informed, making connections.

i'm going to give you my 2c on the whole thing. ms drugs, ccsvi, stem cells are all reactive approaches. if you want to be proactive, you can start looking right now at health and nutrition. if you're in the states (i'm not, am dependent on the doc for requisitions) it looks like you could go online to life extension right now and get requisitions for some relevant tests. for ms, look at serum zinc, serum b12, serum 25(H)d3 and serum (not RBC) magnesium to start. because iron issues are so common, although not specifically in ms, serum ferritin makes sense too.

i strongly recommend getting a few tests done ASAP and bringing the results here for analysis. if you have to prioritize for budget reasons, put zinc among the first tests.

across the board ms patients are lower in nutrient and energy intakes. i have often passed on research to members here regarding athlete nutrient depletion.

a while back i gave the same info to a thin active person with amenohrrea, then counselled her through getting all the related bloodwork done, and starting a corrective nutrient-dense diet plus therapeutic supplement regimen. her nutrient levels got higher, and she got better.

her doctor said there was nothing wrong with her levels since they were inside the 'normal' range the whole time, and that her improvement was coincidence. that just goes to show that the doc does not understand what the 'normal' range actually means.

here is all my introductory info on nutrition for ms, including explation of the significance of the normal range, and target levels for individual nutrients. (fyi personally i don't agree with many aspects of generally accepted 'ms diets')
http://www.thisisms.com/forum/regimens- ... tml#p15460

Vitamin and mineral status: effects on physical performance
http://naldc.nal.usda.gov/catalog/42756
Public health recommendations encourage the selection of a balanced diet and increasing physical activity to foster health and well-being. Whereas the adverse effects of restricted intakes of protein, fat, and carbohydrate on physical performance are well known, there is limited information about the impact of low intakes of vitamins and minerals on the exercise capacity and performance of humans. Physically active people generally consume amounts of vitamins and minerals consistent with the recommendations for the general public. However, when intakes are less than recommendations, some noticeable functional impairments occur. Acute or short-term marginal deficiencies, identified by blood biochemical measures of vitamin B status, had no impacts on performance measures. Severe deprivation of folate and vitamin B12 result in anemia and reduce endurance work performance. Evidence of vitamin A and E deficiencies in athletic individuals is lacking apparently because body storage is appreciable. In contrast to vitamins, marginal mineral deficiencies impair performance. Iron deficiency, with or without anemia, impairs muscle function and limits work capacity. Magnesium deprivation increases oxygen requirements to complete submaximal exercise and reduces endurance performance. Use of vitamin and mineral supplements does not improve measures of performance in people consuming adequate diets. Young girls and individuals participating in activities with weight classifications or aesthetic components are prone to nutrient deficiencies because they restrict food intake and specific micronutrient-rich foods. This information will be useful to professionals who counsel physically active people and scientific groups who make dietary recommendations to improve health and optimize genetic potential.

Effect of the diet on the nutritional status of ballerinas: immunologic markers
http://europepmc.org/abstract/MED/10586612
"Leukocytes, lymphocytes and all lymphocyte subset counts were lower in ballet dancers in comparison with controls"

Osteopenia in Exercise-Associated Amenorrhea Using Ballet Dancers as a Model: A Longitudinal Study
http://jcem.endojournals.org/content/87/7/3162.full
"The amenorrheic groups, dancers and nondancers, both showed reduced BMD [bone mineral density] in the spine, wrist, and foot, which remained below controls throughout the 2 yr. Only amenorrheic dancers showed significant changes in spine BMD (12.1%; P < 0.05) but still remained below controls, and within this subgroup, only those with delayed menarche showed a significant increase. The seven amenorrheic subjects (three dancers and four nondancers) who resumed menses during the study showed an increase in spine and wrist BMD (17%; P < 0.001) without achieving normalization."

life extension blood tests
http://www.lef.org/Vitamins-Supplements ... -Tests.htm

approx prices (25% discount if you are a member but i don't know what is involved with membership.
zinc $40 http://www.lef.org/Vitamins-Supplements ... -Test.html
magnesium $20 http://www.lef.org/Vitamins-Supplements ... -Test.html
ferritin $40 http://www.lef.org/Vitamins-Supplements ... -Test.html
25(OH)vitd3 $65 http://www.lef.org/Vitamins-Supplements ... -Test.html

if you find levels are low, you can look at dietary workarounds for nutrient density and absorption first.

if bloodwork is too expensive, i have managed to help some people 'flying blind' without bloodwork, and one guy refused even using supplements - with him it was straight dietary adjustments to increase nutrient density and minimize anti-nutrient intakes. if you want to do something like that i need a diet diary so that i can tell you what adjustments could be useful.

one more article below.. i propose that since the wheels have come off rather dramatically in your case that you may want to consider spending the money on mag and zinc testing as a first step, since you may in fact want to know whether a therapeutic supplementation regimen will be needed to restore your circulating levels, not to mention possibly a long term programme to replenish bone and tissue nutrient stores.

may as well get copper tested too - although zinc and magnesium are more 'top of mind' when it comes to ms, the serum zinc:copper ratio is also a pretty useful piece of information.

copper approx $65 http://www.lef.org/Vitamins-Supplements ... -Test.html

Micronutrients (magnesium, zinc, and copper): are mineral supplements needed for athletes?
http://naldc.nal.usda.gov/catalog/44024
Mineral elements, including magnesium, zinc, and copper, are required by the body in modest amounts for the maintenance of health and for the development of optimal physiological function. For athletes, adequate amounts of these minerals are required for physical training and performance. Studies of athletes during training, as compared to nontraining control subjects, indicate the potential for increased losses of minerals in sweat and urine. Some studies report suboptimal intakes of minerals, particularly among athletes who are actively attempting to lose weight to meet standards for competition. However, most athletes consume diets that provide adequate amounts of minerals to meet population standards. Athletes should be counseled to consume foods with high nutrient density rather than to rely on mineral supplements. General use of mineral supplements can alter physiological function and impair health.

take that last bit with a grain of salt. i used to be deficient in zinc and low in magnesium and i got WAY better using food yes, but also supplements. you just have to be smart about it. if you do bloodwork and it shows a mineral deficiency, add that to your symptoms and no sane person would say no no don't take a supplement to fix that.

That is your doctors job to tell you there is no cure and put you on drugs for the rest of your life. Many have cure themselves once they get the information. It is all about putting the good things in your body and keeping the bad things out. Here are some videos which explain it.








http://www.franksherwood.com/tnms.htm

jimmylegs wrote:hi lucy, we have all been there, that frantic time when first diagnosed. it is terrible i feel for you.

unfortunately everything takes time. very smart to start by reading, getting informed, making connections.

i'm going to give you my 2c on the whole thing. ms drugs, ccsvi, stem cells are all reactive approaches. if you want to be proactive, you can start looking right now at health and nutrition. if you're in the states (i'm not, am dependent on the doc for requisitions) it looks like you could go online to life extension right now and get requisitions for some relevant tests. for ms, look at serum zinc, serum b12, serum 25(H)d3 and serum (not RBC) magnesium to start. because iron issues are so common, although not specifically in ms, serum ferritin makes sense too.

i strongly recommend getting a few tests done ASAP and bringing the results here for analysis. if you have to prioritize for budget reasons, put zinc among the first tests.

across the board ms patients are lower in nutrient and energy intakes. i have often passed on research to members here regarding athlete nutrient depletion.



a while back i gave the same info to a thin active person with amenohrrea, then counselled her through getting all the related bloodwork done, and starting a corrective nutrient-dense diet plus therapeutic supplement regimen. her nutrient levels got higher, and she got better.

her doctor said there was nothing wrong with her levels since they were inside the 'normal' range the whole time, and that her improvement was coincidence. that just goes to show that the doc does not understand what the 'normal' range actually means.

here is all my introductory info on nutrition for ms, including explation of the significance of the normal range, and target levels for individual nutrients. (fyi personally i don't agree with many aspects of generally accepted 'ms diets')
http://www.thisisms.com/forum/regimens- ... tml#p15460

Vitamin and mineral status: effects on physical performance
http://naldc.nal.usda.gov/catalog/42756
Public health recommendations encourage the selection of a balanced diet and increasing physical activity to foster health and well-being. Whereas the adverse effects of restricted intakes of protein, fat, and carbohydrate on physical performance are well known, there is limited information about the impact of low intakes of vitamins and minerals on the exercise capacity and performance of humans. Physically active people generally consume amounts of vitamins and minerals consistent with the recommendations for the general public. However, when intakes are less than recommendations, some noticeable functional impairments occur. Acute or short-term marginal deficiencies, identified by blood biochemical measures of vitamin B status, had no impacts on performance measures. Severe deprivation of folate and vitamin B12 result in anemia and reduce endurance work performance. Evidence of vitamin A and E deficiencies in athletic individuals is lacking apparently because body storage is appreciable. In contrast to vitamins, marginal mineral deficiencies impair performance. Iron deficiency, with or without anemia, impairs muscle function and limits work capacity. Magnesium deprivation increases oxygen requirements to complete submaximal exercise and reduces endurance performance. Use of vitamin and mineral supplements does not improve measures of performance in people consuming adequate diets. Young girls and individuals participating in activities with weight classifications or aesthetic components are prone to nutrient deficiencies because they restrict food intake and specific micronutrient-rich foods. This information will be useful to professionals who counsel physically active people and scientific groups who make dietary recommendations to improve health and optimize genetic potential.

Effect of the diet on the nutritional status of ballerinas: immunologic markers
http://europepmc.org/abstract/MED/10586612
"Leukocytes, lymphocytes and all lymphocyte subset counts were lower in ballet dancers in comparison with controls"

Osteopenia in Exercise-Associated Amenorrhea Using Ballet Dancers as a Model: A Longitudinal Study
http://jcem.endojournals.org/content/87/7/3162.full
"The amenorrheic groups, dancers and nondancers, both showed reduced BMD in the spine, wrist, and foot, which remained below controls throughout the 2 yr. Only amenorrheic dancers showed significant changes in spine BMD (12.1%; P < 0.05) but still remained below controls, and within this subgroup, only those with delayed menarche showed a significant increase. The seven amenorrheic subjects (three dancers and four nondancers) who resumed menses during the study showed an increase in spine and wrist BMD (17%; P < 0.001) without achieving normalization."

Jimmylegs
Thank you for your very thorough response, obviously I need to look at diet, a diary on this is a good idea.
I live in Ireland, so not much access to alternative stuff.
The diagnoses has been alarming, probably need a second opinion.
I have had bladder problems the last 5 years.
the last few months weakness in my right leg and now foot.
apart from that I have NO other symptoms..
My MRI Scan shows a few spots , not many, but these are in the the motor skills part of the brain, so I am told by Neurologist.
My body other than that at the moment is good. I am still able to teach dance but with difficulty. but I cannot afford to deteriorate any further.
You seem very knowledgeable are you a doctor? All the stuff you give on diet and bloodwork sounds on the money.
Thank you
Is there anything else I can do, what is your opinion on CCSVI?

Hi Lucy:
I was a ballet dancer when my first attack struck. I keep losing what I've written because the service slips out of logged in. Below gives some ideas from my site MS Cure Enigmas.net. A good massage can sometimes get the blood flowing. Good luck


"I believe Dr. Zamboni has discovered the problem – venous blood reflux or CCSVI – but not the sole solution. Detoxification and nutritional therapy coupled with circulation therapies and/or skeletal adjustments may suffice to cure or control MS without taking the risk of angioplasty.
I've concluded there are 5 basic MS types, all of which leading to a reflux of venous blood into the Central Nervous System.
1) CONGENITAL vein malformations. 2) DEVELOPMENTAL vein malformations. 3) AGING vein malformations 4) SKELETAL – Cerebrospinal fluid pressure. 5) TOXIC MS.

As for the current categories of Relapse/Remit and the various Progressive MS's, I don't believe these properly describe the problem and certainly don't point to a solution. The various immunosuppressive drugs developed since 1990 are used only for the Relapse/Remit phase, so once you've hit the Progressive stage, you might as well listen to alternative ideas.
CONGENITAL: This idea is favoured by Phlebologists and Dr. Sclafani. However, it doesn’t account for the epidemiological variations in geography, culture or gender. It certainly can’t explain the dramatic increase in Japanese MS cases over the past 30 years. However, obviously it can be one factor.
DEVELOPMENTAL: My beginning hypothesis was that stress (of many potential origins) damages the veins in the child's developing body so that once adult the veins can no longer accommodate the blood flow. Defects in the circulatory system impede if not outright block blood flow leading from the brain and spinal cord leading to MS "attacks" and subsequent paralysis. It is for this reason that MS first generally manifests during or after adolescence. Dr. Zamboni himself observed deformities in the veins in the back and neck of MS patients. These areas correspond to Acupuncture meridians which control blood/fluid circulation.
AGING MS: The third type develops with age. There is no reason why veins shouldn't harden and malfunction as a part of the aging process. When the valves in veins draining the central nervous system malfunction, blood backs up to injure the myelin sheath.

THE ANGIOPLASTY CURE has been suggested for these types of MS (Congenital, Developmental, Aging) characterized by varied vein malformations - stenosed (narrowed), twisted, exhibiting stuck or deformed valves, or just plain missing. The Italian phlebologist Dr. Zamboni launched the theory he named CCSVI. The treatment consists of threading a catheter through the affected vein and opening it with a “balloon” . Initially the Internal Jugular Veins, the Vertebral Veins and the Chest Azygos vein were treated. Other veins leading from the spinal cord are now treated as well. Development of the Intravenous Ultrasound has allowed Interventional Radiologists to see what is going on inside the vein, determine the appropriate size of the balloon to open the stenosed vein without scarring, and avoid various complications. Stents have been inserted into veins which collapsed after being opened. (Dr. Sclafani believes the early 50% failure rate in the Jugular vein angioplasty occurred because the balloons were too small to open the veins sufficiently.) However, if the balloon is too large it risks scarring the vein lining tissue (endothelium) which might lead to thrombosis – the vein being closed off entirely. There have been cases where, after the initial “liberation”, the vein closes off again and each subsequent intervention leads to more scarring and tissue damage. Some have experienced little if any improvement. (Not all the veins leading from the spinal cord are treated.) Some have found themselves in a worse condition after the angioplasty than before. (One woman reported that her veins shriveled up into useless dried out structures through which no blood could flow.) Risks include brain hemorrhage, blood clots, and stent migration into the heart. Presumably with experience and the development of new techniques and material the few early tragedies which have occurred can be avoided. (Already use of the IntravenousUltrasound has decreased the risk factor dramatically.)
Some have reported dramatic recoveries, often with stents inserted, at least 2 years after Angioplasty. They have been CURED. (I don’t know the longest post operative success story. Treatments began sometime in 2009.) The lives of some have been so transformed that they now wonder if they should declare themselves free of MS and therefore ineligible for disability benefits.

Nonetheless, while some have been apparently cured, the risks of angioplasty are real. Before rushing into the operating theater, consider first treatment of Types 4) SKELETAL and 5) TOXIC MS.

SKELETAL MS: A misaligned skeletal, bone or dental structure can actually restrict the free flow of cerebrospinal fluid which in turn can compress or impede venous blood circulation. Structural problems can be either congenital or developmental in origin (e.g. accidents.) Recent scientific studies have focused on the interdependent dynamic of brain "fluids", the blood and the cerebrospinal fluid (CBF) which bathes the Central Nervous System. Excess cerebrospinal fluid can actually "compress" or limit blood circulation, hence the interest of Chiropractors in adjusting the Atlas bone to assure proper CBF circulation. If the problem is SKELETAL, angioplasty would not be appropriate. In this case it is not a problem INSIDE the vein but OUTSIDE. Chiropractic, Osteopathic or Dental adjustment may suffice to release the brain fluids flow leading to CURE or CONTROL.

FINALLY THERE IS TOXIC MS.
I include in this category not only known toxins such as mercury in dental amalgams, aspartame, glutens and various food intolerances, but myriad microbes/viruses such as mononucleosis, epstein barr, chlamydia, lyme as well as various metabolic disorders such as toxic "gut" and diabetes. OK that's a big category. One might say I am being simplistic. BUT MAYBE IT IS JUST THAT SIMPLE. Whatever stresses the body in those individuals with a compromised vascular system may trigger the blood reflux into the CNS. Illness in childhood may damage the vascular system, stress including toxic stress may trigger the reflux. Toxicity itself may damage the veins. All these factors may stress the vascular system leading to a venous blood reflux. Detoxification, intestinal cleansing, and appropriate nutrition will reduce pressure on the vascular system as well as nurture the brain and heal nerve damage.
CURE: Some MS patients recover through diet cleansing and nutritional therapy alone. Some may have a "temporary" stress reaction to a toxic substance such as aspartame (or mercury in dental almagam fillings.) The reaction is "temporary" in the sense that once the toxin is removed, the MS symptoms disappear. I have even heard that removing glutens from the diet is sufficient to heal.
CONTROL: Dr. Terry Wahls (see You Tube Minding Your Mitochondria) presents another excellent example. She began her treatment by de-toxifying from the MS drugs which were poisoning her and then optimized her nutrition. Her recovery implies that her veins were not actually blocked, but tensed up enough to cause a reflux. Also, she stimulated her blood circulation by electrical stimulation of the bands of muscles on her back, in other words, the bladder meridian. Optimal Diet/Supplements serve two purposes. 1) to prevent stress on the vascular system which might lead to blood reflux and 2) heal damaged tissue.

In addition to nutritional therapy, most MS patients probably will require treatment to enhance blood circulation to prevent blood refluxes – massage, ayervedic massage, acupuncture, self acupressure, osteopathy, chiropractic, swimming.

Again, to make a long story short, Dr. Zamboni has discovered the problem – venous blood reflux or CCSVI – but not the sole solution. Detoxification and nutritional therapy coupled with circulation therapies and/or skeletal adjustments may suffice without taking the risk of angioplasty. "

MS Cure Enigmas.net

hi lucy, you're welcome
a diary is a useful and easy place to start for sure. i can help with diet review and planning.
can you get access to some nutrient blood tests? they are not standard in ms testing, just knowns in research.. can you access a sports nutrition specialist that can order such tests?
i am not a doctor, just have undergrad science education plus 7 years of digging through the research. i'm investigating the idea of turning all the work i have already done into a master's degree.