“September 27, 2011—Burlington, Mass.—Decision Resources, one of the world’s leading research and advisory firms for pharmaceutical and healthcare issues, finds that the launch of several premium-priced novel disease-modifying therapies, including four oral agents, will drive the multiple sclerosis (MS) drug market to increase from $8.9 billion in 2010 to $11.5 billion in 2015 in the United States, France, Germany, Italy, Spain, the United Kingdom and Japan. From 2015 to 2020, owing to generic erosion, market sales will then contract modestly to $10.6 billion in 2020.
The findings from the Pharmacor topic entitled Multiple Sclerosis reveal that the approval of new disease-modifying products are beginning to usher in a new era in the treatment of MS. Oral agents in particular are forecast to capture a 29 percent market share in 2020, with Novartis/Mitsubishi Tanabe Pharma’s first-to-market oral agent Gilenya and Biogen Idec’s late-stage emerging therapy BG-12 each attaining blockbuster status (my emphasis) thanks to robust efficacy, convenience and acceptable side effects. Owing to more-limited advantages, other late-stage oral drugs, Teva/Active Biotech’s laquinimod and Sanofi’s Aubagio, are each forecast to obtain peak-year sales in excess of $450 million.”
Along with drug sales we have Neurologist fees, office fees, MRI fees, Spinal Tap fees, Evoked Potential fees, Hospital fees, Money Money Money and YOU are the happy vessel through which all this money flows.
Fortunately for the money guys, the FDA has nipped in the bud the threat posed by that interloper Dr. Zamboni and his “Liberation Therapy”. No longer will American insurance companies pay for Angioplasty; and the Hubbard study approved by the FDA is not funded which has discouraged participation.
Dr. Sclafani, THE expert on Angioplasty for CCSVI posted this discouraging report on ThisisMs.com Sept. 21, 2014.
CCSVI activity in my practice is practically nil at this time. I see from time to time a new patient and occasionally one of my own patients needing a re-evaluation. I havent noted any new nuances to report back on. Results remain the same, mostly good and happy outcomes with other patients getting small improvements and some not getting any. I still believe that ccsvi treatments help the majority of patients but it is expensive and the published data, as bad as it mostly is, is confusing to patients who are more and more reluctant to come for a visit.
I look forward to the bravedreams outcomes to see if that will renew interest and hopefully allow me to continue to care for patients with ccsvi on a more routine basis. It is frustrating to finally become really expert in the treatment and not having anyone come””
1eye responded Sept 21, 2014
“I wish to tell you that I personally still have no evidence I would give any credence to (much of it tainted, skewed, politically biased, etc.) against the Big Idea (meaning Dr Zamboni and CCSVI) In fact, the neurology profession has convicted itself, in my mind. It would take some serious testimony for me to ever read or listen to a member of that body again. I was skeptical from the first, long before my diagnosis, when much of my supposed meeting with "my" neurologist was spent reading (into the record) the discussion from the previous appointment, which had already been transcribed from a dictaphone tape, and was sure to be re-transcribed from the current tape. Eventually I became convinced that many of these feedback-reverberation-tapes were being kept, and documented, during my subsequent appointments at "MS" clinics.
This ass-covering behaviour and waste of speech and paper, I personally put down to the guilt felt by professionals, who are complicit in the robbery of an entire class of patient, by FUD (Fear, Uncertainty and Doubt) and obfuscation, using their so-called "qualifications", to fool pw"MS" into believing that their "doctors", and their phony medications, for an unknown disease, were the patients' only chance to live and recover. The real motivation for all this is for them and their drug-pushing overlords to get rich, at the expense of those who can least afford it. I thought then and still think that these people are in danger of disappearing where the moon don't shine.*
I will if at all possible arrive in Brooklyn some time in the next few months to see if I can get a better and more experienced CCSVI treatment. I know that that is not enough to keep a doctor out of retirement so I hope you are still practicing when that time arrives.
*This expression came from Dick Cavett, in an interview with Norman Mailer, when he said "Why don't you fold it five ways and put it where the moon don't shine?" My guess is that he was trying to avoid censorship by invoking the moon instead of the usual sun.
END OF QUOTE
Dr. Zamboni has launched the Bravedreams study in Italy, partially funded by the Canadian government according to a report posted by Barts and the London School of Medicine and Dentistry on 8 Oct 2012 multiple-sclerosis-research.blogspot.com/.../ccsvi-und...Afficher le message partagé
It appears that in the United States we are back to square one. We must depend on the Neurologist, maybe get bullied by the Neurologist and wait for the magical drug cure that may never come. Because I believeMS is essentially a blood circulation disorder with numerous origins. How is a drug going to overcome a vein blocked by a bone spur? How is a drug going to overcome a serious stenosis? A drug MIGHT be able to speed up blood circulation (or perfusion) but this is outside the Neurologists’ territory.
The authoritarian temperament is a professional deformation in Medicine. And many if not most patients WANT that authority. That is exactly why drug trials require the double blind protocol. If the Doctor believes a drug will work he can pass that confidence on to the patient which may have the placebo effect coming from the Doctor.
A very real conundrum arises. The Doctors’ appt is relatively brief – 10, 15, 20, 30 minutes? How can he possibly absorb all the details of your experience? On top of that, this is just a job, maybe he is tired, his wife just left him, his daughter got herself pregnant, he really isn’t interested in your health problems the way you are. He does what he learned in medical school – physical examination, lab tests, DMDs. He just wants you to shut up so he can get on to the next appointment. And he too is under pressure to conform to the “standard of the community.” If he doesn’t follow accepted practice he could be accused of negligence or malpractice. You might even sue him for NOT prescribing DMDs.
O.K., I can understand that. But I should be allowed (if not encouraged) to think through my own experience and situation and ask for help based on that. The worst situation for a female is to find herself confronted by a threatened male ego. He may fight like hell to impose his authority, and I’m fighting like hell to survive. Is that fair? Finally, he hasn’t really been educated in nutrition and other aspects of healing. He should monopolize Allopathy for which he is trained. But not healing in general.
For me now, it’s back to the battlefield. Taking care of myself while fending off the MS Medical Industrial Complex.
I was shocked when my Acupuncture Doctor prescribed a drug (Baclofen) to treat MS muscle spasms, knowing as he should that I avoid allopathic chemistry whenever possible. Yes, I’ve taken antibiotics for urinary tract infections (reluctantly) and upon learning of the blood/cerebrospinal fluid factor in MS, have begun to take Alprazolam (Xanax, 12.5 mg to 25 mg) to relax me to sleep. My thinking is that body tension flattens my weak defective veins and relieving the tension can allow the blood to flow better. Whatever I need to do to keep the blood circulating through my brain as rapidly as possible, I’ll do. Since I’ve learned that the active ingredient in Xanax as well as Stilnox (Ambien) may cause memory problems and even eventual Alzheimers disease, I need to find an alternative that works. Apparently Medical Marijuana has helped MSers regain lost function. and I suspect it does so by releasing body/muscle tension which frees blood circulation.
For example March 2014 Tif writes on Thisisms.com
“So yesterday (March 27), for the first time in idk how long, when I went to get something off of the floor I naturally did a squat, instead of using the wall or counter as support, I automatically just lowered my whole body to reach the floor. Yes, I was surprised and happy with the improvement I did several more, just to check...lol. This morning I tried it again and success!
Yesterday, I also noticed my left leg was lifting higher when I walk. Less brushing the ground.”
This sounds distinctly like improvements triggered by freeing blood flow through the brain and I suspect the Cannabis overcomes the body tension inhibiting this flow. Anyway, I would very much like to try it hoping that 1) it will relax me to sleep and 2) it will free up the blood flow.
While Cannabis derived drugs aren’t not now available in France, the French medical authority has recently authorized Sativex, a Cannabinoid mouth spray for MS sufferers. I’ll look forward to a prescription when it’s legal. (I could buy it in another European country. It’s so ridiculous I can’t just grow Marijuana in my garden. It may well be Cannabis is less dangerous than the legal drugs Xanax and Ambien. Except it’s free if you grow it. Can’t have that.)
Why did I begin taking a tranquilizer for sleep, overcoming my dislike of chemicals? For years a pain descending the outside of my left leg would wake me at 3 in the morning. Usually I would get up to read or write until returning to bed at 6 or 7 which meant that I would wake up late in the morning, groggy and depressed, never feeling fully rested. I know that pain refers to the Gall Bladder meridian in Chinese medicine. (I don’t know how that corresponds to the nervous system.) I now believe that waking up late in the morning caused the “fluids” to stagnate in my CNS which accounted for the MS symptoms and have decided it would be better for me to sleep the night through to wake up alert and rested, even if I have to take a drug. I’ve tried Valerian, Melatonin, milk, Sedatif PC (Boiron Homeopathy), any number of things. (Herb teas are a bad idea because I have to get up to empty my bladder 2 hours later.) Since I began to treat myself for CCSVI with TENS acupressure and sleep the night through with the help of a tranquilizer I do feel better. If Cannabis can relax me as well or better than the tranquilizer, believe me I’ll use it and forget the tranquilizer. (I use as my symptom yard stick the muscles in my good left foot. If they cramp up, I consider that a sign of the blood reflux, a bad sign. Recently I forgot to take the tranquilizer, slept soundly for 2 hours, woke up to a sleepless night thereafter and rose in the morning with serious symptoms in my foot. I say it’s better to be a minor dope head than lose my good foot.)
In some ways my mind is a threat to my health. Mornings I can wake up without a single pain in my body. Then once my mind starts to work, my back begins to tense up and my quadricep thigh muscles burn making me wonder if the blood is refluxing into the corresponding part of the brain. I’m convinced body tension “collapses” my blood vessels like a weak garden hose, I have to work like crazy to keep the fluids flowing to bathe my central nervous system. It might be thought the tranquilizer would slow down the fluid circulation, but I believe relieving the body tension is the primary factor.
Back to the Acupuncture Doctor and his treatment. Yes, this summer I was unusually tense. My mother and sister and brother in law came to visit our country home for 2 weeks, numerous guests came, grandchildren and then on August 30 we invited 42 people to a 5 course sit down birthday dinner for my husband. I can’t believe we succeeded. Think of all the details. Food, drinks, table settings. We borrowed 4 long tables, 40 chairs from the village town hall. The week before 3 granddaughters were staying with us (food, meal preparation!) The evening before 2 couples (4 people) came to help with the preparation as well as my husband’s daughter (2 adults, 2 ados!) for whom I prepared a dinner (14 people!) This meant 14 people were sleeping in the house Friday night. Saturday 4 people left, 3 arrived. Did we have enough beds, sheets, pillows, blankets, toilet paper! Oh yes, the table plan for the dinner party, alternate men/women, don’t offend anyone, the ados need to be with their own gender. My husband stayed up late to print out the name plates with his life story photos. I was so tense Friday evening the muscles on my back literally shrunk up around my rib cage until I drank an aperitif which relaxed me a bit. (Normally alcohol irritates my nervous system.) I’ve never felt such tension in my back.
The meal was served in the renovated 13th century stone stable on the property on midday Saturday. And after the meal coffee and then champagne was served, the tables were dismantled, dancing began and young people went swimming in the pool.
Now, would it seem so unusual that I was tense? Is that an MS problem? In fact, today September 25 I’m rather amazed all that stress and fatigue didn’t trigger an attack. I myself was too tired to really enjoy the party and I’m rather appalled by photos of myself (that is to say the cane and the right arm) but the party was a great success, our guests raved about it, many sent thank you notes the days following and I can only be delighted that we were able to give them this pleasure. And my husband shone as brightly as the Sun King himself.
Last week when I told my Acupuncture Doctor that my back tensed up so that briefly I felt the ribs would break he prescribed a generic of Baclofen.. I looked that up on Thisisms.com website to discover that this drug is used to treat MS muscle spasms. MSers recommended Magnesium as an alternative. Why of course, there’s the problem. My naturopath has recommended I take 3 Karuna Cal Guard supplements a day, each tablet containing 250 mg of Calcium and 125 mg of Magnesium to total 375 mg of Magnesium. Except over the summer I wasn’t taking it regularly. Once a week I should count out my supplements in 24 packets (3 times a day for 8 days.) But when I’m overwhelmed with company, I tend not to do it. So I wasn’t being supplemented with the Magnesium which could well explain why my muscles were so tensed up this summer. The past few days I’ve increased my Magnesium uptake by 3 times 100 mg = 300 mg as well as the 3 CalGuards (375 mg) a day to total 675 mg. In the future I’ll be certain to take the Magnesium even if I’ve been unable to count out the rest of the supplements.
Yesterday I visited my Osteopath. He was appalled by the body tension, commenting that the homoplatte was hard as a rock, the back of the skull as well. I need a series of treatments. It was quite stupid of me to let myself go. (I saw him once late May. I was seeing the Acupuncture Doctor once a month but this obviously wasn’t adequate. Plus I think the Acupuncturist upset me last week which undermined the treatment.)
There is something bizarre about being objectified as an MS patient. One is set apart like a lab rat for observation. The observer gets all excited thinking he is about to enter the inner sanctum of MS research. Never mind what I think or what is good for me, or that in fact I know far more about the practical treatment approach than most Doctors do.
Now I have to deflect my Doctor’s displeasure. He wasn’t listening. I very very seldom have muscle cramps and never spasms so this drug would have been inappropriate.
MSers need to think for themselves, really try to understand what is happening in their body. I avoid allopathic chemicals because they break my spirit. Yes, I’m convinced CCSVI essentially defines MS. The MS Medical/Industrial Complex hopes to find a miracle drug cure. I doubt they will find it. The MSer with a physical obstruction needs a physical intervention. The MSer with weak collapsing veins needs to treat body tension. In any case, I'm not going to delay self treatment until they have succeeded.
I feel so much better since I began to treat myself for CCSVI. I used to feel all gummed up, walking around in a haze which I guess describes brain fog. That’s gone. I have resumed my ideal diet (though I confess, I cheat a bit.) I continue to take the Standard Process supplements originally prescribed Febryary 1984. I give myself a Tens Acupressure treatment every morning and I ask my husband for an upper back massage when I can catch him. I take a Xanax almost every night to get a full night’s sleep, and should I feel very stressed I take an Ambien to knock myself out – whatever it takes to avoid an attack. Thanks to “cheerleader” I’ve begun to get 15 minutes of Sun (or UV rays) daily. I walk at least 30 minutes a day or swim. And when it comes available, I’ll try medical marijuana.
I’ve freed myself from the MS Medical Industrial Complex. I hope I never fall victim to it. And I fervently hope that the CCSVI theory becomes mainstream, that MSers can find appropriate therapists to overcome their malfunctioning blood/cerebrospinal fluid circulation problem.
Tags: Multiple Sclerosis, MS, treatment, CCSVI, medical marijuana, brain fog, cannabis, Baclofen, magnesium, muscle spasms.