Thinking ¨"outside the box" I put the following on the Drug Pipeline Thread
and received a rather anxious response. Too bad.
Delay Drugs One Year
On the site ThisisMs.com Alicia asked the following question:
Tues June 4 2013 General Discussion
"I have a question for you. How can anyone possibly tell if a disease modifying
drug is preventing relapses if no one really knows how MS works, everyone's MS
is different and it is impossible to predict when and how often you will have a
relapse? How can studies possibly test this? Even if you are testing a group of
people with MS and averaging everyone's response to a medication, how is that
really saying anything definitive? Why are the disease modifying drugs only
approved for RRMS? Correct me if I'm wrong, are there any approved for other
types of MS like PPMS? How does someone with RRMS know if they are doing well
because of a medication or if it is the natural course of their disease going
into remission? How does anyone know that?
The truth is, there is no good answer. That being the case, I believe one would be well advised to tell one's Neurologist one wants to delay a drug protocol for at least a year from the time one is diagnosed. Why? In order to avoid being pressured into treatment before one can research and try alternatives.
Keep in mind that it is possible to have one big MS attack never to be repeated. This implies for me that a hugely stressful event may cause a major blood reflux into the brain. No further major stresses, no further MS attacks. Let's say one begins taking a drug after this attack which appears to put an end to the MS. Was it really the drug, or would that have happened anyway? And in the meantime one's immune system is being unnecessarily damaged. Perhaps the Placebo effect is at work. "I'm being treated so now I can relax." Well, even if it's the drug which brings relief for primarily psychological reasons, perhaps another less toxic solution would be preferable.
Why a year? That is considered a grief milestone. After passing through each season one can begin to move beyond the loss of a previously carefree life.
Now for a few the only thing they may need to give up is Aspartame consumption. (See blog aspartame ms).
Most should drastically alter their diet, and in particular stop eating glutens (ie wheat). Grieve for Junk food as you throw it away. Detoxification is no doubt in order, and optimum nutrition as well as Supplements. My suggestions can be found under Paleo-Macro diet.
Vitamins? Extract raw vegetable juice twice a week. Carrots as a base will provide adequate Vitamin A. Take a good B complex , making certain vitamin B12 is included. Vitamin C. Vitamine D3 in an important dose. Vitamin E. Calcium/Magnesium 2/1 ratio. Evening Primrose Oil pearls, Omega 3 pearls. These are minimums.
A Kinesiologist used muscle testing to determine my ideal diet and supplements found under Diet section.. Seek advice from a Naturopath/Nutritionist. Check out You Tube Dr.Terry Wahls "Minding Your Mitochondria" for a good visual presentation of dietary transformation as well as where you might end up by taking MS drugs for 7 years as she did. In that sense her video is a cautionary tale.
I realize now that a Shiatsu massage stopped my first known MS attack. (See blog post Pallis/Shiatsu Massage.) I'm convinced MS attacks are caused by a blood reflux into the central nervous system - brain and spinal cord. So if you are having attacks, take measures to stop them. A Massage may do it, Acupuncture treatment, Ayurvedic massage, Osteopathic treatment. Even a well prescribed Homeopathic remedy. I now give myself daily Acupressure treatments with a TENS apparatus to keep the blood flowing and stop attacks. (See Acupuncture blog post).
I've come to the conclusion there are 3 major causes of the blood reflux 1) toxicity (e.g. dietary -see above)
2) skeletal and 3) vein stenosis (Dr. Zamboni's CCSVI).
Toxicity you can deal with yourself, though good guidance will help.
If the problem is skeletal body manipulators such as chiropractors and osteopaths may be needed. Dentists treat jaw misalignments which may interact with upper cervical misalignements. (Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood
circulation leading to a blood reflux implies that attention should be paid to
all aspects of brain physiology. In fact, before considering angioplasty, I
believe one should consult specialists in skeletal adjustment - chiropractors,
osteopaths, dentists - whose manipulations might release blocked blood/fluid
circulation from the head and spinal cord. This is especially important if the
MS develops after an accident. In such cases the problem does not reside IN the vein but
pressure ON the vein.)
Vein stenosis will require venoplasty, the use of a catheter to open and "balloon" a "stenosed" vein. This requires a competent, experienced interventional radiologist. I would eliminate the other possibilities before trying this, and it could well take a year to come to this decision.
For further information check out the site ThisIsMs.com. Under the
CCSVI thread 1) for Angioplasty see "Dr. Sclafani answers some questions"
which is particularly informative since Dr. Sclafani presents reports of
angioplasties he has performed complete with photos. An excellent example
revealing how CCSVI treatment has evolved can be found on page 519 May 21,
2013. Dr. Sclafani performed venography of "both dural sinuses, jugular
veins, brachioicephalic veins, azygos vein, left rebal vein, and ascending
lumbar vein and the inferior vena cava".
2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl. (I am suggesting these sites for information only - a starting point in your own research.)
Another thing to consider is a latent infection - viral or bacterial. I myself use nutritional therapy to strengthen my immune system to keep these infections "latent". I also use Homeopathy to protect myself. The remedy Oscillococcinum by Boiron works marvellously well to prevent colds and flus - all viruses in fact. The care of a good classical Homeopath (single remedy) can work wonders in the Healing process. However, they are often difficult to find. Antibiotics and chemicals will antidote Homeopathic remedies (even coffee for some) so they won't work once on a heavy drug protocol.
I believe MS patients exhibit these 2 basic factors to varying degrees - the
blood reflux and the viral immune system assault. (Perhaps bacterial as
well e.g. Chlamydia Pneumoniae) And to complicate things further,
the origins of the blood reflux vary - body tension, skeletal, or vein stenosis.
A complicated picture with no one-size-fits-all solution. While scientists
thrash this out, I believe it is up to me to find practical solutions to
take care of myself.
Let's say one is having symptoms of paralysis, one is very ill, naturally one panics. Lab tests follow, spinal tap, MRI, CAT scan, eye exam, other? and the Doctor concludes with a MS diagnosis. I believe now is the time to say STOP before falling into the MS trap. This may displease the Neurologist. By saying you want to put off drugs for the present, you are not saying "no", you are saying "let's wait".. This is a more diplomatic way of escaping the MS trap. Because it is a TRAP.
Wheelchair Kamikaze recently (April 17, 2013) posted a blog entry "Anger Mismanagement".
He doesn't say so, but one good reason for this anger could well be that one has the impression of being taken for a dupe. One undergoes all the diagnostic exams - some painful - one submits to drug treatment - some painful, and one falls apart anyway. Doesn't it occur to the victim that obedience wasn't the best idea? Marc admitted that none of the drugs have helped him. Annette Funicello, who died recently, felt that the only treatment which helped her was CCSVI angioplasty. Even though the treament came too late for her, she wanted her Foundation to promote it, even though the big Pharma and Neurology lobby fiercely oppose it.
If one seriously tries alternatives before the drugs, one need have no later regrets.
My approach is more practical than theoretical. What has helped me, what does it feel like to live in an MS body, what do I need to do and to avoid. Dr. Zamboni's blood reflux theory liberated me. Why not others?
AND I BELIEVE IT IRRESPONSIBLE FOR NEUROLOGISTS TO IGNORE THE BLOOD REFLUX FACTOR IN MULTIPLE SCLEROSIS.
Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new
lease on life. I used to live in constant fear of a debilitating relapse. Now I
know what to do to head off a breakdown. Having embarked once again on my diet I
feel better and hopeful of improvement in the future. I know that anything which
improves blood/brain fluid circulation (swimming, acupuncture, acupressure,
massage, kinesiology, osteopathic, chiropractic, any energy therapy) will make
me feel better and prevent a relapse. Having resumed summer swimming, I feel so
energized, my brain is "breathing" oxygen again. (see post Oxygen and MS fatigue). And I need to
be ever vigilant in avoiding illnesses which might trigger off a latent
I hope other Multiple Sclerosis patients will consider these ideas in managing their own treatment.
MS Cure Enigmas.net