it is always possible.
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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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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'm wondering if anyone on this forum has stopped specific ms drugs, and what your experience has been.
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,
Not a doctor.
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.
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 - http://www.thisisms.com/forum/regimens- ... 24019.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
(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
“Dr. Hyman explains his 10 day detox diet.
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