Hi, I’m Bob. I was diagnosed with Multiple Sclerosis in 2009. Hearing the stories of other people with MS has helped me a lot, so eventually I decided to make my own website to try to help others. Here you can read my story, get some quick-and-dirty information from a patient’s perspective, read tips and tricks on how to manage symptoms, and find links to more detailed information from reputable sources. Please note that I am NOT a doctor, just a patient sharing my perspective.
If you’re facing a diagnosis of MS, I want to start with the single most important piece of information you’ll find on this page: you’re going to be okay.
Like most people, I struggled with health issues for years before I got a diagnosis. In the early stages, MS symptoms are mild, intermittent, and biased toward generic complaints like “feeling tired.”
In addition to MS, I have hypoglycemia, which can cause symptoms like low energy, dizziness, and nausea. Thus whenever I had any of these symptoms, I blamed my hypoglycemia. Or I blamed the fact that I wasn’t a teenager, or I figured I must be depressed.
I tried to deal with things by paying attention to diet and exercise. But somehow, no matter how diligent I was, things got worse instead of better. I’d have days where I could walk three miles no problem, and other days where a short stroll left me beat.
Nonetheless, I muddled on until I ran into a strange quirk of perception. It’s kinda hard to describe, but I’d experience transitory face-blindness. I’d have trouble “finding” people. I would fail to recognize people I knew until something drew my attention-at which point I’d wonder how I ever missed them! You know how sitcoms will show somebody “blanking” another person to be rude? I began to fear doing that by accident. I’d look right past people, then do a double-take.
This came to a head when I failed to notice my own wife after we got on the same elevator. We had planned to meet up, so I was actively looking for her. That freaked me out. In fact, I worried that I might have a brain tumor.(1)
The first doctor I saw blew me off. His reaction? “Huh, that’s weird.” Then crickets.
I scheduled an appointment with a new doctor. This one came recommended by a friend. My new doc took me seriously. To be fair, I think I did a better job of communicating with her. She spent a long time getting a detailed history. One thing we discussed was an experience I’d had years earlier in which the left half of my body felt numb for nearly a month. That was probably an early MS symptom.(2)
Then she started scheduling me for tests. Loads and loads of tests. Part of reaching a diagnosis for MS is eliminating other potential causes of the same symptoms.
Bit by bit, my doctor began eliminating other possibilities, accumulating evidence, and easing me in to the diagnosis. MS turned from a possibility to a probability to a certainty. I was glad I didn’t have a brain tumor, but the news still came as a shock. One thing that helped me adjust was meeting other people with MS or listening to their stories on sites like Youtube.
That’s why I made this website. I’m hoping to help others the way they’ve helped me.
What is MS?
MS is a disease of the central nervous system which can affect the brain, spinal cord, and vision system. Most doctors believe that MS is an autoimmune disease.MS targets a substance in our brains called myelin. The neurons in our brains are protected by sheaths of myelin. Think of a neuron as an electrical wire, and the myelin as the sheath of insulation that surrounds it. In MS, the insulation—myelin—is eaten away in little patches. These patches of damaged myelin are called lesions, and they can be detected using brain imaging techniques such as an MRI.
MS usually starts out as “relapsing-remitting.” In this stage, symptoms come and go. Something will trigger the disease process, and symptoms flare up. This is called an exacerbation. Then the disease will calm down and symptoms improve. The trouble is, you never get quite back to where you were before the exacerbation.
If left untreated, MS will often convert to “secondary-progressive,” in which symptoms get steadily worse and don’t improve.
Sometimes MS will start out as “primary-progressive,” which is similar to secondary-progressive except that the disease never goes through the relapsing-remitting stage.
Because MS can randomly hit myelin anywhere in your brain, and because your brain sends electrical signals to your entire body, MS has an astonishingly long list of possible symptoms. Fortunately, most people don’t get them all. A handful are common: fatigue, muscle weakeness, blurred vision, impaired coordination, and false sensations including pain and itching.Fatigue is THE symptom. It’s universally present and it is the defining factor of the disease for most patients.
MS is not contagious or hereditary. Family or friends who are worried about these issues sometimes don’t dare ask, so consider dropping this info in a conversation as early as possible.
Is MS Treatable?
Yes. MS can’t be fully cured, but treatment can slow down the disease’s progress and help manage various symptoms.
At the time of my diagnosis, four disease-modifying drugs were used as front-line treatments to slow MS down. (Since my diagnosis, a couple more drugs have been added, but I haven’t read up on them.) My choices were Copaxone, Avonex, Betaseron, and Rebif. All of them offered these major benefits:
- reduced chance of having an exacerbation
- reduced time and severity of exacerbations
- reduced chance that MS would convert from relapsing-remitting to primary progressive.
- slowed overall rate of symptom progression
I asked my doctor which of the four was the best, and she told me firmly, “All of them are equivalently good. Pick whichever one fits your lifestyle best or whose side effects concern you least. The important thing is to pick one and stay on it.”
Because every exacerbation has a chance to do permanent or slow-healing damage, these drugs provide the most benefit when you stay on them permanently. All of them are safe for long term use.
For people who have severe cases of MS and who don’t respond to the front-line treatments, more hardcore drugs are available. The symptoms are correspondingly more severe.
Remember that no drug fully stops the disease. If you see symptoms progress, that doesn’t mean the drug isn’t helping.
Sometimes MS symptoms can be treated directly. In other cases, their impact can be diminished by lifestyle changes. The “Tips and Tricks” gives a few suggestions, and you’ll find many more as you read the MS literature on the web, talk to your doctors, and talk to other MS patients.
Dealing With Doctors
I’ve made some snarky comments about doctors on this site, but the truth is, I’ve also had some fantastic experiences. I’ve had the good fortune to receive care from dedicated professionals who really dug into what was going on with me. I’m grateful for that.I think most doctors are pretty decent. However, when you have a chronic progressive condition, you need and deserve someone who is not merely decent, but outstanding. Ask around, and pay attention to how you’re treated.
Here’s a fun bit of trivia: many excellent doctors LIKE treating MS patients. Why? MS falls in an interesting sweet spot from a doctor’s perspective. At one extreme they get everyday ailments like flu (in a healthy person) that don’t present much challenge. Kinda boring. At the other extreme they get complicated diseases which are interesting, but life-shattering for the patient.
With MS, your condition provides an intellectual challenge in the form of changing needs over time and a host of new treatments under development. You need their best care. Yet you can also live a mostly healthy life with a near-normal lifespan. From a doctor’s perspective, that’s a good deal!
MS Tips and Tricks
Auto-injectors vs manual: I started with Auto-injector. For me it was a great way to get going because needles terrified me. I never could have done a manual injection. Over time, I got used to needles. Around four months in, my Auto-injector broke and I switched to manual injections. I’ve never gone back. I prefer them now because I think they’re a little gentler. Stick the needle in with a moderately fast jab. Going slow just makes it hurt. If you do it right, you’ll barely feel the poke.
Depress the plunger slowly. Your injection should take at least ten seconds. If you go too quickly, you will cause more bruising and swelling around the injection site. An icepack can help with post-injection pain and swelling.
Avoid standing. Often people with MS find standing to be far more exhausting than walking, because the disease subly affects our balance, and standing requires the most balancing. If you can, sit. Walk. If you HAVE to stand, lean on a wall. Use a cane for balancing, even if you don’t need one to walk.
Stay cool. Heat can trigger a temporary increase in MS symptoms.
Fatigue is usually worse in the evenings, even if you used to be a night owl. Adjust your schedule to account for that.Exercise is good for you, but be realistic about how fatigued you will be afterwards. Fatigue can cause a temporary increase in MS symptoms, so be smart about things like driving after an exercise session. Use your brain first and your body second. I.E., put tasks which require intense concentration before exercise sessions, not after them. Exercise may leave you with temporarily impaired concentration.
Ice packs can help with itching, both from injection sites and from MS symptoms. For me, itching comes out when I’m short on sleep, so I try to prevent it by getting adequate rest.
Usually the body carries signals to the brain, which then activates neurons designed to tell you something hurts. In MS, your brain will just spontaneously activate those “pain” neurons without any input from your body. The subjective experience hurts just as much as pain stemming from an actual injury. In short, MS pain is all in your head, but so is every other kind of pain.
My theory is that real sensations overwhelm false ones. If I get persistent pain, I ask my wife to firmly massage the affected area. It seems to help, though of course when the pain stops, I never know for sure why it stopped, any more than I know why it started.
Here are some of the links I've found most useful.