How I Got MS
May 10, 2016
Updated October 14, 2021
In the prevailing theory about how one gets MS, both genetic predisposition and specific environmental factors are required to trigger the body into an autoimmune state. Once in autoimmunity, the body will remain in that state indefinitely.
Many doctors believe that most people will never need to worry about getting MS, no matter what environmental factors they may face. Nonetheless, no simple test yet exists (although, one is being worked on) to know if you have a genetic predisposition, so controlling your environment is a good idea, no matter who you are. About 2.8 million people worldwide have MS.1 In the US, nearly 1 million people have MS 5, or about 1 in 333 people.7 Canada has an estimated 90,000 people living with the disease with an average of 12 people diagnosed daily.2
New research suggests that a particular gene may have been identified, which is responsible for the autoimmune response. "This study concluded that the ANKRD55 gene may play a fundamental role in this deregulation."3 If a gene can be identified, then theoretically, a test can be created.
Environmental factors include gut dysbiosis or a "leaky" gut (usually caused by diet), bodily vitamin D levels, exposure to particular types of bacteria or viruses (especially the Epstein-Barr Virus, a.k.a., "mono" or IM), and diet. While I always thought I had a pretty healthy diet, by today's standards, it was high in inflammatory foods.
"Studies on migrants suggest that a childhood in the developing world, where infection with Epstein-Barr generally occurs early, lowers one’s risk of M.S. But acquiring Epstein-Barr in adolescence or adulthood, when it can cause mono — infectious mononucleosis (IM), the “kissing disease,” as American teenagers call it — more than doubles the risk of M.S."4 From JAMA Network Open, Oct. 11, 2021, IM during childhood, particularly during adolescence, appears to be a risk factor for subsequent diagnosis of multiple sclerosis (MS), independent of shared familial factors.6 I had IM when I was 18.
Environmental factors also include lifestyle. Things like regular circadian rhythms (good sleep cycles), regular exercise (but not to the point of complete exhaustion), and low daily stress help reduce inflammation. Alcohol consumption can compromise all of these.
So, when I was infected with mono, my adaptive immune system learned how to identify the virus and how to destroy it. This same process occurring for other viruses is why we don't get most colds more than once. Mono, however, has a molecular structure that is very similar to good parts of the body, which makes many scientists think that this is one particular disease that is associated with autoimmune. After being infected, if the body enters a high state of inflammation, it can trigger the immune system to activate and start searching for things to attack. Voila. Autoimmunity. Probably the single biggest influence of causing the body to enter a high state of inflammation is diet.
I heard one doctor say that in MS, genetics loads the gun and the environment pulls the trigger. In this case, "environment" pertains to a particular type of virus exposure in addition to a state of high bodily inflammation.
In MS the immune cells actually start to attack the central nervous system by destroying the insulative sheaths, called myelin, which surround nerve fibers. After an attack, a scar can form without the body actually healing the damage. MS can become so destructive that it actually starts to destroy the nerve fibers (or axons), themselves. Precisely where nerve damage occurs will determine the particular, resulting symptoms. Some common symptoms include ataxia and walking disability, neuropathic pain, fatigue, dysfunctional thermal regulation, eye pain and vision problems, "brain fog," balance control, and bladder control.
- World Health Organization 2013 Report. MS International Federation
- Multiple Sclerosis Society of Canada mssociety.ca
- US Population is 333,490,143 as of Thursday, October 14, 2021. https://www.worldometers.info/world-population/us-population/
- My Stem Cell Transplant Date: June 5th, 2016
- Treatment duration: 4 weeks
- Typical onset of disability reversal: +9 months
- Typical complete recovery from procedure: +1 to +2 years
- Typical maximum reversal of disability: +2 years
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
- AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED
- Check-In (Year 5.2)
- No New Activity on MRIs (Year 3.6)
- Bloodwork Back To Normal (Year 3.3)
- Why Neurologists in the US Don't Recommend HSCT (Month +35.8)
- Better Pain Management (Month +33.6)
- Final Re-Vaccinations & The Medical Cannabis Primer (Month +32.9)
- "Sustained Decrease in Disability" (+30.6 months)
- No Progression Seen on MRI (Month +29.7)
- Cruising Along (Month +29)
- Nerve Decompression Surgery (Month +21.8)
- Looks Like It Worked (Month +17.2)
- Further Pain Improvements (Month +15)
- Significantly Lower Pain (Month +14.4)
- More Thoughts About MMJ, Meds & Pain (Month +13)
- +1 Years and Counting! (Month +12.6)
- Better & Better (Month +11.5)
- Major Pain Improvements. Finally. (Month +10.6)
- DIMS, SIMS and the Medicine Cabinet in the Brain (Month +9.6)
- Sliding Sideways ( Month +9.2)
- Pain, Pain, Go Away! (Month +8)
- Doctor: MS in Remission! (Month +6.75)
- Neuroplasticity (Month +6.1)
- Hopefully, My Last MRIs, Forever (Month +6)
- Chemobrain (Month +5.2)
- Kickin' and Screaming (Month +5)
- Month +3.7 Progress Report
- Fresh Foods Welcome! (Month +3.2)
- Thoughts About Pain (Month +3)
- Making Good Progress (Week +12)
- First Followup Rituximab Infusion scheduled (Week +9.5)
- Walking Towards Improvement (Day +54)
- Neutrophils Recovering Appropriately (Day +39)
- Less Pain Lately. Horray! (Day +25)
- The Highs & Lows of Recovery (Day +22)
- Homeward Bound (Day +12)
- Treatment Complete (Day +11)
- Final leg of the procedure (Day +10)
- Healing fast! (Day +8)
- Neutropenia (Day +6)