No Meds

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No Meds

Postby zenhead » Fri Feb 27, 2015 8:52 am

i am in the process of switching from mycophenolate (Cellcept) to either tecfidera or aubagio. for some reason, my request for cellcept was denied - medicare rules change, no longer approved for ms treatment - hence the switch. researching the available info online has me very discouraged. i have often considered going med-free, just dealing with smyptom treatment and relying on diet and what exercise i can do. of course, my neuro doesn't like this - "you have to do SOMETHING." i'm wondering if anyone on this forum has stopped specific ms drugs, and what your experience has been.
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Re: No Meds

Postby jimmylegs » Fri Feb 27, 2015 11:05 am

Hi :) I haven't *stopped* taking MS meds per se.. I just haven't taken any before. I'm 9 years in as of last month, and the docs would probably say i had ms for a couple years prior to official dx. i had a strong rationale for a nutritional component to my state of health so have done very well with major but very personalized mods to diet and lifestyle. i think each person's response to a given regimen will vary depending on the personal constellation of dynamics that led to their individual diagnosis. overall my experience has been good, but i definitely took some hits while learning how complex managing nutrient balance can be!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
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: No Meds

Postby sonnym22 » Fri Feb 27, 2015 11:17 am

I've considered stopping meds (Tecfidera). That's all I've taken since being diagnosed last summer. I haven't had relapses or a major episode that I know of before being diagnosed. Had peripheral neuropathy (mild) since Feb, 2009 and right ear hearing loss for 3-4 months in early 2014 (came back after steroid injections by ENT and yes that was very painful).

I don't know if the Tecfidera is working or not. Nothing has changed with me since starting it 8-9 months ago.
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Re: No Meds

Postby 1eye » Fri Feb 27, 2015 11:35 am

i'm wondering if anyone on this forum has stopped specific ms drugs, and what your experience has been.


I stopped all DMDs involuntarily, in 2004, when my neurologist unilaterally (and as far as I am concerned, arbitrarily) decided I was SPMS, and refused to prescribe any of them to me. I could walk, then. I had my driver's license.

I was not pleased, and stopped going to that neurologist.

Around that same time, I drove myself to the physiatrist's office, at the rehab hospital, for a follow-up appointment. after a short stay there. I innocently answered the question: "Would you object, if they took your driver's license away?" No, I wouldn't. My reasoning was, that if they did that, they would have a good reason, like I had killed somebody while drunk, or gone blind.

Mistake. Within a few months, the Ministry took my license away. No explanation. I could still see, walk, think, just fine. I had MS symptoms, but I was not disabled. I had been driving my wife and two kids around every day without incident. That didn't matter to the physiatrist.

I lost my ability to walk without a walker, a couple of years after that. By that time I had really crossed that magic line into "SPMS". The use of DMDs probably would not have made a difference, but regardless, I could not have afforded to pay for them. I had insurance, but could not get a prescription.

I subsequently had the CCSVI procedure and had about eighteen months of many benefits, but I still could not walk without the walker.

Yesterday I went back to the same physiatrist, because, as I discovered, without my asking her to, my new neurologist had made me an appointment there. Now I wonder what fresh hell they have in mind for me. I guess I will find out.

In theory I can challenge the removal of my driver's license. I know someone in a power-chair who is doing just that. I also know someone who drives her power-chair into a van on an elevating platform, and uses a special steering wheel because her hand doesn't work very well.

But to get to the stage where you can go on the driving-simulator and get your license back, you have to get the physiatrist to give you an appointment. It is the same doctor. Not likely to happen.

The people in the medical system that I have run into, no matter how smart or well educated they are, do not care about you. They do as they please, as their habits and customs dictate.

Anyway some of the benefits I got from the procedure, in August 2010, are still there. Had I had another procedure, maybe they would all still be there. But I am still having more and more problems. I am experiencing disease progression, maybe more slowly, but MS has not gone away. Maybe if I had been stented, and stenting had not caused further trouble, I would have fewer symptoms. The Canadian medical system, and my MS, have had their way with me.

You do not have to "do something". There are lots of non-drug things you can do. But it is still a disease with no known cause, and people get worse, at their own rate, and nobody can even predict that,
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Re: No Meds

Postby syckbastid » Fri Feb 27, 2015 12:14 pm

I've been off meds 8/10 years post diagnosis (including last 5 yrs). Did a year on Avonex following my first acute attack and a year on Copaxone following my second acute attack. I have not had a relapse in past five years (though a recent MRI showed 2 new brain legions). My EDSS is a 1.

I am a firm believer in diet, exercise, and the bubonic chronic (aka marijuana) for disease management.

Best of luck, regardless of the route you choose.
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Re: No Meds

Postby Scott1 » Fri Feb 27, 2015 5:19 pm

Hi,

I was on Avonex for 10 years and gradually got by without it and tried Tecfidera for a month after a recent attack. Whilst I'm not anti anything that helps, it seems that any accepted approach does not do much more than delay the time between attacks. Some are better, some are not. The FDA notes on most medications describe the cause of MS as unknown and often they don't describe how the medication makes a difference. More often they talk in terms of times between relapses. None of them claim to be a cure but their marketing implies it.
Currently I am not on any accepted protocol but my ideas are buried in this note - regimens-f22/topic24019.html
If it works, do it. If it doesn't help, look for something else. I urge you to try to read the FDA note on whatever you take. If you are unfamiliar with a term then ask or look it up. Try to understand what you're taking.
Over time I have become very disillusioned with health care providers because they have the right to dispense but they are poor at investigation and hopeless at enquiry and interpretation. Some people can't tolerate ceasing the medications and some are better without them. If you do decide to stop then have a plan. Don't just stop and wait. It is the sum of all the things we do that makes a difference.
I don't miss those medications but I tried them when I thought I needed them

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Re: No Meds

Postby vesta » Sat Feb 28, 2015 9:01 am

On October 17, 2013 Dr. George Ebers gave a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency.
http://www.youtube.com/watch?v=OqY-_K1fYJY.
(Dr Ebers followed MS patients over 30 years before DMDs were available. He has followed MSers on drugs for 25 years.)

Dr. Ebers basically said that current MS medications do NOT prevent descent into Progressive MS disability. See my blog (MS Drug/MRI Fallacy January 5, 2014) DMD’s treat the inflammation of the early RRMS. Once the Progressive stage sets in, they don’t work and decline sets in. Apparently the brain atrophies as do the veins draining the brain. It has been demonstrated that blood transit time in MS patients is one half that of normals. The question is one of perfusion i.e. blood flow, volume and mean transit time. ALL brain fluids contribute to adequate blood flow.

Dr. Ebers has engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors.

Joan Beal (cheerleader on Thisisms.com), who oversees treatment for her husband Jeff, has combined the various options by 1) arranging the first Stanford CCSVI MS angioplasty (in his case the Jugulars were opened with stents) 2) using the MS drug Copaxone to prevent relapses and 3) "prescribing" optimal nutrition to nourish the brain's grey matter as well as the veins' epithelium.

Dr Ashton Embry worked up an MS treatment program for his son Matt who enjoyed benefits from angioplasty for about 3 months before the vein closed again. Matt uses exercise to keep the blood flowing (so do I but I'm not in great shape like him. Doesn't matter, I do what I can.) Check out his video, it's a good general MS "recipe" (diet, suppléments, etc)

Matt Embry's video http://www.mshope.com

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLo
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, artery etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help) Work especially to maintain strength in the back.

Previously published on my site MS Cure Enigmas.net

http://www.mscureenigmas.net/
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