The following article emphasizes the importance of lifting weights and working out. The good news is that if you work out at all,your survival time goes up substantially. I know that going to physical therapy and working out played a big part in my MS going into remission:
Lemtrada is a once a year infusion that may slow or possibly stop the progression of multiple sclerosis. It is a once a year infusion, but the first year you receive infusions for five days in a row. Subsequent infusions are once a year but occur for three days in a row.
Insurance companies paint it as being for relapsing-remitting multiple sclerosis, MS, after two ms drugs have failed. That is because there is some risk to the infusions.
It reminds me of the procedure used that stopped my MS in its tracks in the early 2000s. I was given big bags of steroids for three days in a row, which dampens the immune system, while also physically making your body stronger. On the third day the infusion included Cytoxan which modifies your immune system.
Because your body is revved on steroids, the immune system modification occurs quickly. This was done every three to six months, depending upon how I was reacting. It worked. My MS symptoms remitted, and have continued to improve until the present.
It is my guess that the Lemtrada may be working similarly. There was a lot of risk with the procedure I went through, and there is risk with Lemtrada. I believe it may be risky because both procedures basically turn your immune system off temporarily, followed by the immune system being less hyperactive about attacking your nervous system.
Both procedures use steroids heavily, which dampens the immune system. I had a severe infection after one set of infusions that landed me in the hospital for a week which I recovered from.
I continued to improve using once a week Tysabri self-injections, which I did for almost ten years; however, there is a danger to using Tysabri. The danger is that you may activate a latent JV virus which then causes multiple myelomas in your brain. They have a test that indicated I was getting close to JV virus activation, so I fortunately was able to switch to the new 800 pound gorilla in the fight against multiple sclerosis, Ocrevus.
The first time you take Ocrevus, it is infusions given two days in a row. The infusions last for six months. Subsequent infusions occur every six months and are for one day, with the infusion taking three or four hours.
My health has steadily improved since my late fifties. At 66, I am in better health than I was in my thirties. I developed MS in 1991 right before the first effective medications for multiple sclerosis were developed. Ocrevus is the best one by far. Tysabri helped a lot, but I noticed that I was more likely to get a cold or the flu on Tysabri. That has not been the case with Ocrevus. Ocrevus is for both primary progressive multiple sclerosis and relapsing remitting MS.
Neurologists are seeing the light regarding the importance of vitamins. I always took about 400 units of vitamin D. My neurologist recently recommended that I increase it to 20,000 units. They are getting research results implicating low levels of vitamin D with increased risk for multiple sclerosis. And beyond that, as noted in the chart above, low levels of vitamin D may play a role in many diseases.
See helpful healing to chronic disease described in my book “Multiple Sclerosis Mission Remission: Healing MS Against All Odds” available at amazon.com.
A study involving MS patients with secondary progressive multiple sclerosis was conducted at the Oregon Health and Science University. People who took lipoic acid had less brain atrophy. There was less brain tissue loss with people who used lipoic acid compared to a control group. The results were promising enough that phase 2 studies are being conducted regarding the safety and efficacy of lipoic acid.
This study caught my eye because I use alpha lipoic acid because it is good for skin. I wonder if the alpha lipoic acid that I have been taking for years was one of the many factors that sent my primary progressive multiple sclerosis into remission. I also take DMAE for skin, but know of no studies regarding its effect on MS.
I was having trouble with my eyesight. Double vision was new for me. I was dropping things I held for no reason. My balance was unsteady and I would sometimes fall down seemingly for no reason. My wife, being the board certified psychiatrist that she is, insisted that I consult with a neurologist. Numerous tests and procedures were performed (to be described later). It was time for us to meet with the good doctor and hear the results.
When we went to obtain the results, the neurologist mumbled a few words at me and looked down at the floor while he spoke. I processed nothing of what he was saying to me. Repression is a remarkable phenomenon. He met with my wife for what seemed like a long time. Driving back from the doctor’s office to Arizona State University Student Health where my wife was the psychiatrist on the eating disorders team, Debby was uncharacteristically quiet.
When we drove into Student Heath and I stopped the car to let her out, I found out why.
“Well, I guess we will keep trying to figure out what is going on with me,” I said with resignation. “What are you talking about? The MS looks severe,” she said. Deborah never suffered a fool well.
With disbelief Dr. Deborah Brogan said, “Didn’t he tell you that you have MS, multiple sclerosis?”
“What?” I asked.
Debby, answered, “You heard me. The doctor said you have multiple sclerosis.”
So it began, my fifteen-year journey through purgatory. I thought I must have made serious mistakes in a previous life. At the time it seemed as good an explanation as any for why I contracted multiple sclerosis, MS.
I have lost the bet. You thought that you had been so healthy most of your life—surely you would not contract a neurodegenerative disease.
The above is an excerpt from my book “Multiple Sclerosis Mission Remission: Healing MS Against All Odds.” It is available at