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Are you a driver or a passenger on your road to health? June 3, 2010

Posted by manonamsion in multiple sclerosis, swank diet.
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Are you a passive patient or are you an advocate for yourself in the medical system?  I’m always surprised by the intelligent people I know who follow doctors’ orders without asking any questions or even understanding their medical condition, the medications they take or their doctor’s recommendations.  My diagnosis with multiple sclerosis in 2008 was my first real window into the reality of the health care system – and the degree to which your care is only as good as the doctor you select and the research you do on your own.

My diagnosis story is a good example.  My first symptom was a bout of optic neuritis, which was misdiagnosed by a retina specialist as vitreous separation.  When my vision suddenly came back, but my hand went numb, I was sent to a neurologist (who was not an MS specialist).  After several tests, she was stumped.  When I asked about the results of the MRI she had sent me for, she told me it wasn’t in the file.  Minutes later, her assistant handed her a sheet of paper and she looked at me and said “You have MS.”

Over the next 10 minutes, she proceeded to tell me that I needed to check into the hospital immediately for 3 days of tests and IV steroids (notwithstanding the fact that my hand had been numb for over two months due to her delays); that I would need to take a weekly shot (Avonex) that would put me out of commission for a couple of days a week with flu-like symptoms (with no discussion of other treatment options); and that I needed to find a less stressful job that would let me work from home at least one day a week when I had flu-like symptoms and other MS problems.  I thought my life as I knew it was over.

I was lucky to have a close friend who is a doctor who, that night. called around and found me a terrific MS specialist in New York City.  That doctor spent two hours the next day with my wife and me, discussing MS, treatment options, prognosis, etc.  After talking with the doctor and doing my own research, I went on Copaxone immediately, which has minimal side effects (mostly annoying site reactions).  I don’t have time in my life for flu-like symptoms, and I don’t have much faith in the interferon drugs, for reasons that Dr. Jelinek details well.  I didn’t need to be hospitalized, and I certainly didn’t need to change my career plans!

I continue to have a great relationship with my MS specialist, and my appointments every few months are a dialog.  I bring lots of questions, and he is very open to having an intelligent discussion with a well-informed patient.  Needless to say, at this point, I think I am more knowledgable about MS than the original neurologist I saw.  I also do my own research, and that’s how I found the Swank diet.

So here’s the bottom line: don’t be a passive patient.  No one cares more about your health and your future than you do, and you owe it to yourself to become knowledgable about your condition and your options.  If your doctor isn’t willing to have a dialog with you, I recommend you find another doctor.  Also, if you have access to an MS specialist, rather than a general neurologist, you are much more likely to get up-to-date medical advice and recommendations.  (Note that I use the words “medical advice,” not “doctor’s orders.”  While I certainly don’t suggest you ignore what your doctor recommends, you shouldn’t just be taking orders.)

Beyond your doctor, however, you should be doing what you can to learn about and understand multiple sclerosis.  Most doctors are focused on the drug therapies they can prescribe, often because they are not well-informed about nutrition and lifestyle factors, and frequently because they do not think you will change your behavior even if confronted with the need to do so.  But be careful in your research – there is a lot of junk out there and some of it can hurt you.   As you know, I am convinced in the value of the Swank diet, but before I proceeded with that, I read Dr. Swank’s book and the secondary research provided by Dr. George Jelinek.  As an accomplished doctor who is also living with multiple sclerosis, George Jelinek offers us the unique perspective of someone who truly understands the medical profession, medical research AND the immediacy and urgency of proper care that only a patient can really understand.  His book is a fantastic resource, detailing his opinions on all the treatment options, from the most conventional to some that sound really out there.  His website is terrific, and I’m delighted that his book will be available in the United States soon.

I am not a doctor, and I will never offer you medical advice.  But I do urge you to drive the car instead of being a passenger.  As for the road I have chosen, I understand that many will not take that fork in the road.  But you aren’t making that decision if you haven’t educated yourself – you are simply choosing to let someone else drive, closing your eyes and heading down the road with your eyes closed.  Read Dr. Jelinek’s book or website and then make your informed decision.  Be the driver.

Be well,
Man on a MSion

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Comments»

1. Julie Calder - June 3, 2010

I have a good understanding with my neurologist – we tend to have scientific discussions about MS rather than him telling me what to do. He knows I am very interested in finding out about CCSVI, and as a result he has arranged for me to have a Doppler scan next week, because he is doing some research into this. I’ll be interested to see whether the fact that I have been on the Jelinek/Swank diet for 2 and a half years may have made me less susceptible to CCSVI.

manonamsion - June 3, 2010

Julie – I’ll be interested to hear what you find out. As you know, I am a bit of a skeptic on “liberation treatment”; I’ll take eating right and exercising over surgery, if possible. But the vascular question is one worth pursuing. I’m still wondering if CCSVI is a cause of MS, or just a symptom . . .

2. Alan - June 3, 2010

My Neurologist refused to tell me anything about the drugs except they were all equal in effectiveness. I have only learned through my reading and own experiences, that she’s a traditionalist in that her job is to prescribe, not to discuss with me. So she has taught me almost nothing about the illness. Last visit she gave me the best advice she’s managed so far – that I should rest.

She will not tolerate any questions about the medication, i.e. could interferon be causing any of my symptoms, should I switch, etc.

I will soon have another doctor. Yes.- find a doctor you trust, who is concenred about you as an individual, not as a research subject.

3. Julie Calder - June 5, 2010

I tend to believe in Zamboni’s theory up to a point, but not necessarily that CCSVI is the *cause* of MS. I think that patients with MS are ‘prone’ to having CCSVI, which then produces certain symptoms . I think these symptoms may be a bit like ‘altitude sickness’ which is also caused by lack of oxygen to the brain. I can see how the ‘liberation procedure’ would help to combat these symptoms, however it worries me that if people don’t have healthy diets and don’t avoid saturated fats, their veins will become blocked again very easily. They would then need to have the ‘liberation procedure’ done all over again!
We should all do our best to keep our veins as clear as possible by following the recommendations outlined by Swank and Jelinek!

4. Mess Positif - June 6, 2010

My doctor was quite clear in her instructions: go away, stay as fit as you can, see me again when you need a wheelchair. My neurologist was even more un-constructive. At the time that seemed incredibly callous, incompetent and unhelpful (these are very highly paid people who set themselves up as authorities). But this helped me rely on my inner resources. Sometimes the Internet seems a sewer, but blundering into Swank/Jelinek was a boon. I’ve enormous respect for George, and for me (above everything) integrity matters, and I’m so cynical of motives, looking for holes that give away the lies and agendas (so often money).

One of my personal crusades is currently to try to monitor MS symptoms, get an objective sense of how they wax and wane. Look for patterns, cause & effect influences. I’ve so much to learn. All part of owning me and gripping my steering wheel.

Of the birds I fed to help them through last winter, one in particular became more reliant on handouts. I can see that I’ve helped make it less competent at fending for itself. My pleasure at being wanted is diminished by the knowledge of how that has weakened the animal I’ve come to look out for. I’m sure its long term prospects are poorer than would have been.

IMHO white coat + drugs may do something or nothing for MS health, but it can (in parallel) leach away autonomy and inner battling force.

Thanks MoaM, I totally agree and appreciate your subtle exposition of these issues.

5. Rebecca Hoover - June 15, 2010

Alan, when the interferons do make about 1/3 worse, I would think your doctor *would* discuss this with you. What a nasty doctor. I am glad you are switching.

Mess, as to your doctor, again I am underwhelmed. When 50% of those with MS never end up in a wheel chair, one wonders who needs a Dr. Gloom and Doom of the type you saw. I hope you read my web site at http://intelligentguidetoms.wordpress.com .

Bah humbug on some doctors.

Rebecca


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