2 1/2 Years and No Progression
Photo by Chad Johnson, Flickr
Yesterday I had an appointment with my neurologist, who I’ll refer to from here forward as Dr. N. This was my second appointment with him. My first was a month earlier, when I explained that I had been treating my MS with diet and supplements alone, and LDN beginning in March of 2009, and hadn’t been to a neurologist in a year and a half because I found my last one to be a condescending jerk. I had explained that I wasn’t coming to him with the intention of beginning a drug regimen, but rather to develop a relationship with a doctor who would act as my partner in treatment and respect my choices. Dr. N had been enthusiastically referred to me by a friend who also has MS and has been seeing him for ten years, so I had reason to believe he would be a good fit for me.
He is – as far as neurologists go – pretty cool. When I explained my treatment philosophy and reasoning, he threw a few light-hearted barbs my way – asking me where I went to med school and such (which I appreciated because I like a doctor with a sense of humor) but he didn’t pressure me into taking the medication and did not condescend to me the way previous neurologists had. He played his role – letting me know what the studies show about the efficacy of the drugs and what he’s experienced first-hand in his practice, all of which indicated that the drugs did indeed work to reduce frequency and severity of attacks and slow progression of the disease. But, and this was the important part, he stopped short of telling me what to do, which left me feeling cautiously optimistic about this new relationship as I left his office with my MRI script.
Yesterday, MRI films in hand and winged insects flying around in my stomach, I drove north on I-95 to Dr. N’s office for my second appointment. All my talk about diet and supplements and lifestyle would either be supported or not by the black and white, objective, irrefutable results of these films. I considered the possibility of the news being bad, of having the doc tell me that I had five more spots lining my corpus callosum and should seriously consider beginning on the drugs immediately. I even had a speech planned in the event of that result.
What was I so afraid of? I guess, in part, it was ego. I had chosen a path – the path less traveled for sure – and didn’t want to be proven wrong. But I’m so stubborn and believe so strongly in what I’m doing that I don’t know that it would be possible to prove me wrong. Information worth noting? For sure, but I don’t believe for a second that I would have abandoned my path. More crucial than the threat to my ego, however, was the threat to my hope. Hope is the engine that drives me, and most everyone who has an illness (especially those pesky ones without cures). If my MRI had shown that my disease was progressing despite my best efforts, it would have sent a grenade through that hope, and sent me digging even deeper, down into the hole that was left behind, to find the remains to keep me going. Also, I didn’t want to feel stupid. I didn’t want to be wrong. And the truth was I felt an unexplainable confidence that my MRI would show me exactly what I believed to be true – that what I was doing was working.
When Dr. N came into the exam room, he sat down and said “I know you know your body, but every now and then, patients are wrong, so let’s go have a look.” We walked down the long hallway to a lightbox mounted on a wall. He placed my old scan next to my new scan, explained a few things, and said, casually, “OK great, no change. Everything looks the same.”
EVERYTHING LOOKS THE SAME!!!
Everything looks the same. Everything looks the same. It hadn’t sunk in yet. We walked back to the exam room and sat down. Dr. N said, “Based on your MRI, I’m comfortable saying you can keep coasting, doing what you’ve been doing. You’re clearly doing something right.” Then he went on to say, “It’ll be very interesting to follow you over time. Very interesting. Maybe I’ll be writing you up in ten years.”
I left his office elated. I was diagnosed in July of 2007, and immediately began a strict diet and supplement regimen. Since that time, 2 1/2 years ago, my MRI has remained unchanged, and I have never taken any of the traditional MS drugs. Put another way, I have successfully halted progression of my illness with diet, supplements, LDN, and a positive attitude. What will the future bring? I have no way of knowing, but yesterday’s results have even further bolstered my belief that what I’m doing is working, I’m on the right path, and my effort has paid off. My hope is becoming conviction, and I like it that way.
Congratulations Karen. That’s amazing and yet completely expected. The powerful impact of having made a decision to direct your health and well-being should not surprise us at this point. You are a real example for anyone who wants to decide and pursue themselves healthy.
And yet my favorite thing about this entry is what is becoming possible for your physician… and by proxy for everyone who reads this. By persevering and sticking to your guns regarding your treatment strategy, even while under the care of an allopath, you’ve accomplished two things: first you gave him the clinical experience he needed to begin to consider another way of approaching MS; and second, you gave everyone who reads this proof positive that the health profession is capable of updating and evolving itself. Dr.’s can learn new things, even when they don’t fit with what they already know. Talk to your health care partners. Collaborative health care can start with you… you just might have to be patient with them ( no pun intended )
The quantum impact of this experience is really frickin’ exciting.
How many people with that diagnosis could potentially benefit from your Dr.’s expanded awareness??? Really, really cool.
Karen- I am likewise winning this battle with diet and nutrition. I would LOVE to know what supplements you are taking for optimal healing. I was diagnosed in June 2009 and am just getting started. Any advice is wonderful. Stay Strong, Karen
hi karen. i just read your story on your blog on flourish. we’ve got some interesting parallels in our stories and definitely in our approach to healing. it’s great to be introduced to another MS warrior like yourself!
i was just going to suggest that you listen to the interview i just did with Ann Boroch and then i just got your comment on that post. my supplement regimen is complex – i take something in the neighborhood of 20 plus pills a day and they are all tailored specifically to my individual case. that said, it wouldn’t make sense for me to tell you what i take because you may need different supplements and different doses, but i highly recommend a session with ann – she really knows her stuff and is amazing. i send everyone her way for the diet/supplement stuff. i’d love to stay in touch with you, thanks for writing!
I love this post! And not just because…well…you know. You give me inspiration. Once day…when I grow to be more disciplined…perhaps Dr. N will have 2 patients to follow;) Love you and I’m soooo proud of all you are doing for yourself and for others. I’m forever grateful to have stumbled upon you!
thank you viv. the feeling is mutual. i owe you for connecting me with Dr. N and being there for me. free photos of your baby for all of eternity!!!