it's MS

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it's MS

Postby annekepanneke » Sat Jan 19, 2013 4:24 pm

Monday I got diagnoses with MS. I am an almost 48 year young woman with awesome husband and 4 super kids (all of them "adults").

I first got diagnosed with Optical Neuritis in March, already had urine retention problems and balance problems (with some other complaints) before. In October I got an MRI, there was a lesion on my spine. They first thought of Devic disease (NMO) but the neuro of the MS clinic kind of ruled this out based on the fact that my lesion was only 1 cm.

So my MS is attacking my back and my eye(s). I feel I am a bit old to get MS and it's also hard to feel when I have a relapse, allthough I am feeling pretty bad right now, lots of complaints, there are not many times that I am completely free of complaints. So it seems I have relapses but not a lot of remissions.

My main problems include
- fatique
- shaky legs
- balancing problems
- dizziness when standing up or turning
- back pain
- weird sensations mainly in legs sometimes other parts of my body
- urine retention
- cold
- weakness (hands)

Further I am fine :)

I am starting on Rebif as soon as the insurance kicks in (In May), I am in Canada and although my husband has a plan that covers it partly, I still have to pay about $400 per month. I just applied for a provincial plan that will cover a bigger part however it takes 3 months to kick in. I also started on Amytriptyline (hope I spelled this right) for the pain.

I am still hoping to learn more about MS and how to deal with it now and in the future. Hope to learn a lot from all of you guys here at ThisisMS!
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Re: it's MS

Postby Anonymoose » Sat Jan 19, 2013 5:57 pm

Hi Anneke,

I am sorry to hear about your diagnosis but happy to welcome you here. :) I hope you find some helpful information...I'm thinking supplements might help during your wait for Rebif (and after). I know a certain nutritional guru will be dropping by shortly to help you out with that...

Be well
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Re: it's MS

Postby jimmylegs » Sun Jan 20, 2013 5:37 am

that would be me :) welcome to the forum!
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: it's MS

Postby vesta » Sun Jan 20, 2013 8:10 am

After Diagnosis
Once the diagnosis has come down, it's a demyelating disease, probably MS, step back and relax, at least you don't have a brain tumour. And stress and anxiety will only make matters worse. Imagine the blood backing up, flooding your brain and/or central nervous system. You have to stop that reflux as soon as possible. That means RELAX. All the diagnosic tests in themselves are stressful, so step back from all that and begin to inform yourself.
Marc Stecker of Wheelchair Kamikaze believes that the immunosuppressive drugs developed over the last 20 years are the best treatment now available since they appear to have slowed disease progression for relapse/remit cases Nonetheless reports of efficacy are contradictory and reported side effects often serious, even fatal. (Once one hits the Progressive stage, nothing is available so one might as well seek alternative healing techniques.) Drugs are not the only option available although it's likely the only one the Neurologist will offer. Neurologists are treating an immune system reaction to a blood reflux. They are treating a secondary problem. Consider treating the original problem instead. But to do that you will have to take matters into your own hands.

I believe a major illness is a call to change. Either one participates in the transformation, or one will be transformed against one's will. I also believe true healing requires a healing partnership. The best healer acts as a faclitator in one's own self transformation, not as a director. The worst thing one can do is act like a passive object on whom an omnipotent Doctor works his "magic". An alternative healer (naturopath/nutritionist/kinesiologist???) who can help you think through the various options can be an important complement to "official" medical contacts. Now is the time to act.

Refer to the previous blog entry - MS Cure or Control: A Review

1) First, Stop the "attack" which is actually a blood reflux. I've found a neck massage forcing the blood down towards the heart is enough to stop one for me. An Acupuncture trreatment - the Gall Bladder Meridian and Bladder Meridian must be treated (see Acupuncture blog entry) - has worked for me. Your problem may be structural, so a Chiropractic or Osteopath's adjustment on the Atlas and upper cervicals might release the brain fluids. The Neurologist might have a drug which will stop the attack, though I wouldn't take something that you can't get off of after the crisis is passed. (My own early experience of an MS attack meant 6 weeks - 2 weeks of "attack" (the blood must be flooding the CNS), 2 weeks of "scarring" when the myelin dries up, and 2 weeks to recover most of lost function, leaving some deficits.)

2) Once the crisis is passed, get busy on finding a practical solution. First off, analyse what stress factor triggered off the attack. Was it emotional, professional pressure, or some kind of poisoning such as too much aspartame? An accident which injured the head-neck,back? Keep a journal and note whatever issues trigger off a problem, play the detective in your own life. Then make the necessary adjustments.

3) Consider the TOXICITY factor. Stop Aspartame and other food additives at once. (Don't bother with the mercury dental amalgams, at least not at first. Having them removed can even increase the toxicity if badly done, and there are many other factors to consider first.) I include food intolerances in the TOXICITY category.
DIET: Assume you have a gluten intolerance. Check out the Paleo-Macro diet page on this site. I favour Kinesiology to determine the ideal personalized diet, but a good therapist may be difficult if not impossible to find and for some the method (muscle testing) may appear akin to witchcraft. So find a good naturopath/nutritionist. The Paleolithic Diet developed by Roger MacDougall can be found on Wikipedia. Jimmylegs on the site is their on site diet expert who gives referrals to other resources.
DETOXIFICATION should be part of the therapy.
SUPPLEMENTS Besides the vitamins A, B Complex, C, D, E, include Calcium Magnesium, Omega 3, Zinc, Evening Primrose Oil, Seek good advice and do your own research.
INFECTION: Some believe that infections such as Chlamydia Pneumoniae, Lyme, Epstein-Barr or other infectious diseases actually damage veins and their valves. Is the Infection still ongoing, or has it passed leaving a damaged vascular system? Some believe by treating the infection through antiobiotics the inflammatory reaction to the infection can be halted, thus restoring the vein to its proper function and preventing the blood reflux. Again the veins are implicated. However, long term treament with antibiotics obviously requires a Medical expert I was treated for a chronic infection using Standard Process Cataplex A-C, Collagen C, Calcium Magnesium and Zinc (among other things.) I believe a naturopathic protocol superior and less toxic than antibiotics. (imagine how the intestinal flora reacts to all those antibiotics.)
IMPORTANT: I believe that in the early Remit/Relapse phase one has the greatest chance to entirely heal the myelin sheath/nerve damage before it has actually dried up into a "scab" or scar. I did so within 4 years of the first big "attack". But now for me (26 years later) it is more a question of preventing further degradation.

4) Consider the STRUCTURAL factor. This means consulting with body manipulators such as Chiropractors or Osteopaths. Dental misalignment may be an issue. Once the area of blockage is identified, you may be able to treat yourself regularly with massage, stretching etc.

5) Consider the BLOOD CIRCULATION factor. Acupuncture, Self Acupressure, Ayervedic Massage, Osteopathic, Chiropractic, Swimming can all enhance blood circulation without the risk of angioplasty. I am now able to control the blood reflux through self acupressure on a daily basis. Acupuncture treatments must focus on the meridians which pass from the head, down the neck and across the shoulders or down the back, the gall bladder and bladder meridiens. Otherwise they probably won't be effective on the blood circulation.

6) ANGIOPLASTY decision. Begin by seeking NON-INVASIVE diagnosis of your veins. A quick look on Google brings up a clinic called Privatescan in Brussels which claims to use non-invasive CCSVI investigation techniques and diagnosis protocols - CT Scanner from G.E., CT venography with contrast agent, EchoDoppler Duplex from GE, 3.0 tesla MRI Scanner (MRI venography) with G.E. contrast. (I need to research this further, but so can you. I'm not promoting any clinic or therapist for angioplasty. If anything, I believe angioplasty should be tried only if all else has failed. see Angioplasty Decision blog ) If you decide on angioplasty, it is imperative that the Doctor use an INTRAVENOUS ULTRASOUND to open the stenosed veins so he can see what he is doing and avoid injury to the vein wall. Also, be assured of follow-up care.
If one has a serious vein obstruction, deformation or the vein is simply missing, angioplasty may be the only solution. It of course would be grossly unfair to imply one hasn't tried to heal if the veins are defective or even missing. It would be like admonishing an amputee that if he really works on it the arm will grow back. Of course it won't. Annette Funicello very generously and courageously published a video showing how far her disease had progressed as well as the results of an angioplasty procedure. One jugular had been entirely blocked, the other 70% blocked. She and her husband Gene Holt believe this is the only treatment which has helped her over the past 25 years of illness and she wants to promote the CCSVI theory to help others, believing if she had been treated years ago she wouldn't now be paralyzed.

IMMUNOSUPPRESSIVE DRUGS- If one has a serious physical vein blockage which causes a blood reflux, probably one will require medication to minimize CNS damage until angioplasty can release the blood flow. In this case the Neurologist would seem to be the best therapist. Tricky issue.

I want to encourage the newly diagnosed to act in their own self interest. MS isn't a death sentence, it's a call to change, the sooner the better and with you as an active participant.
These remarks are above all an admonishment to myself for having let myself fall apart after my first dramatic healing. A kick in the butt you might say. But now that the CCSVI theory is on the table, we have every possibility to take control of our fate. And in the first instance, that means ME. I'm now going to finish my personal history with particular emphasis on MY MISTAKES.

MS Cure
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Re: it's MS

Postby want2bike » Sun Jan 20, 2013 10:44 am

You might want to look at studies showing the effectiveness of drugs before starting them. Make it your decision since you will suffer the results. ... _embedded#! ... 1295097210 ... html?_r=3& ... nking.aspx
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Re: it's MS

Postby vesta » Sun Jan 20, 2013 12:55 pm

Thanks for that great list of drug outcomes. I've never really bothered to research them because I think taking them a mistake.
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