There’s no point in playing the blame game after the disease is diagnosed

In a fruitless search for the cause of my MS, I became a detective of my past

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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In a previous column, I wrote about the journey to my diagnosis of multiple sclerosis (MS). In it, I mentioned that the neurologist had praised me for “taking this well.” I suppose I did — at first. When I eliminated the other possibilities, I was left with an old (hopefully fixable) brain bleed, multiple sclerosis, or a lot of potentially fatal choices. MS wasn’t my top pick, but it wasn’t my bottom one, either.

I wasn’t thrilled about receiving the news on Valentine’s Day. After all, some people get chocolate and flowers. My gift was anything but sweet, but I was happy to finally have an answer.

At the start, I wasn’t as interested in the “how did this happen” part as I was in the “how do I fix this.” I realized the importance of the first part, but I was still in denial — not denial that I had MS, but denial that I’d ever let it get worse than an annoying limp. I honestly thought I could outstubborn this disease, or simply not give up and try extra hard.

When that didn’t work, I found myself concentrating on how this happened. I wish I could tell you that my new focus arose out of curiosity or to advance medical science. It’s since become a means to satisfy both, but it started as an angry search for something or someone to blame.

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I assume I have a genetic predisposition for the disease, despite having no family history of it. I’m also of northern European descent, so maybe I’m more prone to MS. But what was the triggering event? What was the cause (preferably one that didn’t make me responsible) where I could place the blame?

I’ve really taxed my immune system over the years. I had the Epstein-Barr virus (EBV) when I was 16. Research points to that as a likely trigger, but is it “the” trigger? If not, maybe it’s some other, less common illnesses I’ve had: giardiasis, Q fever, and shingles. I’ve also tested my antibody response with multiple vaccines, including those for anthrax, rabies, smallpox, and yellow fever.

To top it off, I’ve had four concussions — that I know of. I threw that last part in because two years ago over dinner, an Army buddy told a story about a time I was knocked unconscious in the back of a truck. Although I remembered the event in detail when my friend told me about it, I’d completely forgotten it for nearly 16 years. I’m no doctor, but as far as concussions go, that’s probably not good. If you were wondering why I considered an old brain bleed in my first paragraph, that’s why.

The point to all that was to check the boxes for a number of possible triggers, but I have nothing definitive to blame. That leaves me with nothing to attack or try to fix — no one and nowhere to displace the responsibility.

I was the last person I wanted to bear any responsibility, but without a cause, I couldn’t even blame myself. It’s hard to be a proper victim if you can’t even identify your oppressor. In fact, it can be depressing.

I still read everything I can about possible causes or triggers for multiple sclerosis. These days, it’s out of benign curiosity and for its research benefits for potential treatments. My opinion now is that no single thing pushed my immune system over the edge. I think it was a combination of events, and I’ll never know which one struck the final blow.

That’s OK. Playing the blame game was no fun at all. I do not recommend it.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Christopher Fox-Walker avatar

Christopher Fox-Walker

I have had MS since 1980. I am 83. I have used Hyperbaric Oxygenation Treatment weekly for more than 35-years. It helps in the management of MS symptoms and more importantly regular treatment can and does slow down the progression of symptoms. Hyperbaric oxygenation treatment is dealt with in great detail by Emeritus Professor of Medicine Philip James in his book Oxygen and the Brain, pub. 2015. Oxygenation treatment is simple, safe, inexpensive and without any significant side-effects. I have never used any prescriptive drug therapies. Multiple Sclerosis only means many scarrings. It is not a diagnosis. It is a description or definition of the secondary symptoms. There are 65 registered charity MS Centres in the UK operating 83 pressure chambers.

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Christopher Fox-Walker avatar

Christopher Fox-Walker

By reading textbook accounts of multiple sclerosis, the Law Lords were
exposed to the auto-immune theory, a concept which dates back to the 1930s.
The central tenet of auto-immunity postulates that the immune cells of
the body attack normal tissue. Somehow, it is postulated, a component of
normal tissue becomes an antigen in multiple sclerosis patients and is said
to be responsible for attacking the myelin which forms the sheaths around
many nerve fibres. However, it is usual for a trigger to be suggested that
initiates the sequence of events, and it is usually claimed that it is a virus.
However, no virus has ever been found, despite years of research, which
has even included biopsies being taken from the brains of patients during
acute attacks. Equally, no antigen has been identified in normal tissues. De-
spite the absence of any scientific evidence, the viral auto-immune theory is
often presented as certain fact. Page 240 Oxygen and the Brain

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Christopher Fox-Walker avatar

Christopher Fox-Walker

MS since 1980. Hyperbaric oxygenation treatment weekly since 1983. Never used any prescriptive drug therapies.

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