It has been a year and a half since I have been off of all disease-modifying drugs. Besides keeping myself to a fairly strict diet and coming to accept the daily chronic pain I have, I did not have to face the reality of having MS. And then in April I relapsed and one morning I woke up not being able to pick up my foot or leg. I got the MS hug for the first time and all kinds of strange symptoms that I don’t even know what to put a name on. The world suddenly became much scarier and I was afraid to go outside.
I met with my new neurologist who advised me to take a round of steroids and get back on disease-modifying drugs immediately. He warned me that I could get worse or never recover from this relapse. I left the appointment scared. I got an MRI that confirmed my disease was progressing, much faster than it ever has before. He again advised me to take the round of steroids and resume drug treatment.
The thing is, I have decided my life is too precious to live it every day with the horrible side effects I had on those drugs. The QUALITY of my life matters too much to me now to take something I know is causing adverse effects in my body, just to stay alive and able-bodied longer. Don’t get me wrong, this decision to not make any decisions out of fear was itself a scary decision to make. But how empowering it was to tell my neurologist this. And how empowering it is to tell all of you. I AM TERRIFIED. But I’m going to be okay. I trust my instincts on this one. I knew when I was going to relapse and I was “poo pooed.” Now that I have, I am listening to what my body has to say, not my doctors.
I say doctors because I have more than one. I am seeing a doctor who specializes in holistic medicine. He was advising me to take a different course just as my neurologist was advising me to go the conventional route. Since I have done steroids, this time I decided “what the heck, why not try something else.” If it worked, I would have a new tool in my box. So I took five infusions of glutathione. Within two weeks I was back to walking without a cane. Now I have almost all of my strength and ability back. I cannot say that glutathione is solely responsible for my recovery. I also saw two different physical therapists three times a week. I have kept up daily exercises while resting more and pursuing an even stricter diet. But the holistic doctor advised a round of alpha lipoic acid infusions in an attempt to clear up the torso symptoms I am still having. Unlike the glutathione, I reacted to this infusion with an immediate migraine, which aggravated all of my other symptoms. I wanted to trust this holistic path so I scheduled another two rounds of infusions. A few minutes into the second infusion, when the migraine hit and I was being assured that was unheard of, I wanted to put my trust in the doctors again. And then I realized “Wait, a doctor is a doctor- I am the one who knows what is best for me!” I put an end to the infusion right then and there.
My journey out of this relapse and beyond is still up in the air. I am going to look into the three pill forms of MS modifying treatments. I am reading and researching and resting. I am curious to know how many of you have chosen to try to beat MS without disease-modifying drugs and how many of you have tried the newer forms of treatment in pill form. We hold the most experience in the ups and downs of our bodies. Care to share?
6/7/2014 07:32:25 pm
It is at least worth a shot to try one of the new oral therapies.
6/9/2014 09:42:12 am
6/10/2014 01:21:30 am
Thank you Dr. Kinkel. I am writing this to you with IV steroids in my arm and I am looking into the oral therapies today. As I got further into reading The Wahls Protocal, I saw that staying on conventional therapies, at least until the body heals on a cellular level, is necessary. With the conventional and functional therapies explained to me, I now feel better equipped to move forward. This is why it is called a journey! Next blog will be on the way shortly... :)
6/12/2014 02:36:52 pm
Dear Emily, I asked my self the same question (the one from the title), and my answer is: EVERYTHING i can! Be it vitamin D, paleo diet, fish oil, sublingual B12, sport, CoQ, N-acetyl cisteine, stopping obsessing about MS and every minor symptom, smoking cessation (3 years now), finding new things i like doing, meditation, (won't name it) approved DMD, positiveness, damn it i did it all. I feel better than ever, despite one severe relapse and many new lesions while on previous DMD and before starting this comprehensive program. I have tons of energy, one healed lesion, no new relapses, no progression. Which one (if any) of the mentioned things worked? I will never know, but i don't care. I will just keep on doing it :) Good luck to you and everyone! Ana
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