When aIl this started, I never realized what I would have to go through. So, I have decided to tell you what I've discovered these many years in the hope that it can help you in some way.
Unfortunately, I have no guaranty of a cure, but maybe I can provide some help and some insight.
Recently, at a presentation in California,. a researcher from the Mayo Clinic confirmed that MS is not an autoimmune disease, and there is also a high probability that it is not caused by a virus or bacteria.
Indications pointed towards a biochemical imbalance causing sensitivities to some environmental combination. This, to me, could explain all the different levels and types of disability progression.
They got vague on whether it's possibly triggered by artificially fertilized foods lacking critical nutrients, pollution not readily noticed, such as mercury, or carbon dioxide the electromagnetic radiation emitted by all of the technology permeating our airw aves, such as from televisions, computers, cell phones. etc.
Whatever the cause, they narrowed one aspect down to growing up away from the equator. The farther away you were while growing up, the greater the chance you might get
Now I'm seeing online that they are vacillating back to "auto-immune" rhetoric. What is going on? I saw a moment of clarity, erased by something which I personally do not think makes much sense.l
Researchers in England have found a leukemia drug, called Alemtuzumab. Yet another drug which slows the progression of relapsing-remitting MS. No cure. Another immunomodulator, leaving users vulnerable to diseases.
What is MS, really? Is it just one disease? There are so many occurrences that are so varied, I wonder if there is a multitude of similar, yet different neurological diseases all lumped together under a convenient title.
The things I have discovered as far as diet is concerned, whether it's animal pro tein or fat, grain gluten (located in wheat, rye, .oats, barley, etc.), dairy (milk, cheese, eggs), and yeast, diet does affect symptoms.
Each individual has to pursue their own trial and error study, and approach it as you would approach food allergies. It has been determined that controlling your diet and exercising as much as possible will help alleviate your symptoms.
There are books and Internet sites written regarding MS diets. The two which have influenced me the most are by Roy L. Swank and Roger MacDougall, etc.
Robert O. Young, PhD presents another slant regarding diet.
However I would tread warily. A lot of theories fly around. So, be careful.
I still cannot walk, but have not given up. I use a stationary bicycle under my own power (I used to need computerized power assist.) So I am slowly improving. I also attempt to daily use a three-pound weight to exercise my upper body. The durations vary based on my energy level. I am now t rying to find a way to afford parallel bars to help with my walking.
As for supplements, I take B-3, B-6 and B-12 twice a week, 2 glyconutrient complete twice daily and oil of evening primrose daily.
Regarding my diet, I avoid gluten, dairy and eggs, although I do occasionally eat something that might contain an egg and I have sometimes cheated. Unfortunately, I've always paid the price through exhaustion, tremors, loss of coordination increased numbness. Although my diet has stopped my leg spasms and the associated. pain, which was excruciating, I have yet to find anything, whether medicinal or dietary, to stop my tremors or Nystagmus (I call them "eye bobbles" for lack of a better term.).
I can calm them down, however, using all the supplements, exercise, small doses of clonazepam. I would be remiss if I failed to mention my reoccurring bladder infections, which I've heard can be common for people who are paralyzed, even if only partially.
Previously, in fact, for well over seven years, I obeyed the doctors. I first tried Betaseron. It didn't occur to them to ask me if depression ran in my family nor inform me that it was a possible side effect. When I called up sobbing for no reason, I was told to stop immediately.
I tried Avonex when it came out, but had the same response. When Copaxone came out, it slowed the progression, without side effects.
I took it for seven years. I still progressed, although slowly, I still progressed.
It makes me suspicious. I heard a comedian make a comment (I do confess I'm paraphrasing) how the FDA is a wholly owned subsidiary of the drug companies. Well, maybe, although they are making progress in controlling the rate of deterioration, curing this dilemma would end the need for continuing their pursuit
In addition to diet and exercise, the one thing I have yet to master is stress. Monetary worries, the frustration of having to r ely on others for basic care, such as eating, bathing, even poopy diaper changing. It's humiliating enough, but being dependent on the state is like being in prison. My worry is that I can no longer remain in my home, and my pets will have to go.
I am alone, much like the estimated 2.4 million worldwide but do not patronize me with condescending phraseology, You don't understand. It's very complicated." Spare me. I'm not an uninformed neophyte. I think it is time someone, whether a researcher or a member of the NIH, the FDA, or some other funding agency, start thinking outside the box. That just maybe drugs are not the solution. Maybe it is our environment. And a new life protocol may be the solution.
My guess is to attempt a three-dimensional cross-sectional timeline study to determine if there is one or several relationships.
Either that or get angry and prove me wrong. I dare you!