I spent the entire weekend documenting everything I’ve tried for my MS. Thank God for iCal, my Amazon order history and the “purchase” file I keep in my email app. I’m not surprised by the vast majority of medicines, therapies and equipment as much as I’m shocked at what I forgot. For example I literally had …

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Living With MS: What I Wish I Had Been Told When I Was Diagnosed

August 6, 2018

If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:

A) I’m a stranger

B) You’ll probably spend the next 6 months scouring the internet and come across a plethora of amazing and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.

I completely understand. When you have a disease that doesn’t have a cure, you tend to subsidize western medicine with non-traditional options as you search for answers. Now don’t get me wrong. I’ll happily pop the “MS Cure All Pill” once science creates it. I’m also open to revamping my stem cells and / or fixing or replacing whatever freaky gene caused me to get this disease in the first place. But until the FDA says those procedures wont result in a 3rd thumb growing out of my ass, I’m trying whatever else is available to me.

This approach requires reading lots of articles, researching new findings, discovering new tools and equipment, embracing holistic approaches to health while seeking out new, never-before-heard-of scientific advancements. This happens because when you’re diagnosed with Multiple Sclerosis, besides taking one of the more than a dozen available disease modifying drugs, no one actually tells you what to do. There’s no standard MS protocol to follow. Science has no idea which diet works, which form of exercise is best or which drug is better, thus you fall down the Internet rabbit hole while looking for things to try.

Since I’ve had Multiple Sclerosis for almost a decade I thought I’d write out what I wish I had been told by the Neurologist that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to, daily, during the first year.

A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will definitely find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon or listening to beta waves during REM sleep. But most patients simply learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress-release, and medication for your particular body, mind and spirit.

But a chronic condition is just that – a condition – which is a state of health that changes. So even if you do everything right, you will absolutely experience a really bad day due to your diagnosis.  Likewise if you don’t take care of yourself, you can skate for a while but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.

It’s not your fault so cut yourself a break.  You can’t control your genetic makeup or all the environments your parents or loved ones placed you in, growing up. The only thing you can control at this point is your lifestyle choices. Therefore when it comes to any chronic condition the popular adage, “Genetics loads the gun but environment pulls the trigger” is true but perhaps lacking a third element…

“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.” 

Embrace a general, anti-inflammatory lifestyle.  Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten free, paleo, raw, vegan or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet to start with.

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Move as much as possible. Because MS can negatively affect your gait, balance and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes and basically choose walking in lieu of driving as often as possible, just because I could.

Find the best way to release stress. For some that means yoga and meditation. For others it involves kick boxing or banging out frustrations on a drum set. Other’s require a creative outlet to clear their mind and feel sane. Figure out what you need and do it often.

Give yourself time to slowly grow and change. Begin by eating more vegetables in general before you decide to give up grains, only eat raw foods and throw out your microwave.  The same with supplements, organic foods, and healthcare. In a perfect world I would only eat organic, but if I did that I wouldn’t be able to afford co-pays to see certain providers, buy the cool walking stick I love from Canada or try out the $200 foot-drop brace I found online.

Be a curious scientist about your health not a judgmental, inner critic. Keep a journal and take “data”, focusing on one change at a time. Start by noting how you feel physically, mentally and emotionally when you try something new or different.  Changes take time to go into affect so give your body time to adjust before trying something else and clouding the data.

Remember, this is a marathon, not a sprint. Non-runners need at least 4 months to go from their couch to the finish line. Being newly diagnosed with a chronic condition (that you’ll have your entire life) is like training to run yearly marathons. You’ll need to simply run on a regular basis while figuring out the best way to eat, hydrate, stretch, rest, rehabilitate any injuries, while responding to other illnesses, stress and age-related changes. Twenty year old runners are different from 63-year-old runners. Disease processes across one’s lifespan require just as much adaptation and ingenuity.

Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy and money.

Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth but sometimes their delivery and word choice plants a negative seed that can grow wild, weeds in your head.

Personally I try to hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and positive as I am. If I leave their office feeling discouraged and deflated, I find someone else. Medicine doesn’t know what causes or cures MS so it’s pretty arrogant to think it knows exactly what will or wont work for me. I’m happy to embrace a balanced approach to health as long as they’re happy to encourage me and my ideas. They know medicine, but I know myself.

Be gentle and compassionate with yourself as you figure this all out. It’s taken me a decade to find:

The right professionals to see as needed

The right types of exercise, medicine, alternative therapies, nutrition, stress release and cutting edge information to use as needed.

  • Yoga (Meditation, Pranayama, & Gentle, prop-heavy / chair classes that increase capacity)
  • Equipment (Step Smart brace, Active hands, Urban walking poles)
  • Western medicine (Twice a year Ocrevus infusions)
  • Exercise (Elliptical / Rowing machines & Walking, CARS joint work, Functional Range Conditioning)
  • Alternative therapies (Frequency specific micro-currents, NeuroKinetic Tx, Medical Cannabis),
  • Nutrition (WW / Whole foods eating),
  • Stress release (Writing / Talking with friends with chronic conditions)
  • Cutting edge information (Autonomic nervous system work, Neuroplasticity, Irene Lyon’s Nervous System Work ).

I’m still trying to figure out how much of the above to do and how often to do it. It’s taken me years but I finally learned to figure out what I need with the understanding that it’ll change and I’ll have to tweak everything again. Because of that:

  • I don’t get as mad as I used to when something stops working for me.
  • I try not to let the amount of work required freak me out.
  • I don’t feel guilty for not spending 8 hours each do only focused on my MS.

Seriously did you see the list above? It’s fucking long! If I did everything daily – I’d get nothing else accomplished.

Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money and marriage problems. Others have health issues, addiction, or mental illness. Some live in cults, suffer from abuse, get bounced around the foster care system or are homeless. People are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Many are disowned by their families while others are downright suffocated by theirs. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.

Don’t compare yourself to others with your same condition. I’m a 51-year-old, married, “doesn’t have to work”, privledged, white woman who is the mother of grown children. I have the time, energy and money to try and fail at lots of things for my disease. If I were a single mom with 2 jobs and 3 kids I wouldn’t have tried a fraction of the above options.

If anything I blog about MS to try and cut through the bullshit to save other’s time, energy and money. Therefore if you have a specific question about something I’ve played around with, reach out. I’m happy to offer my thoughts and point you toward any research I’ve come across so you can make the best decision for yourself.

Lastly, you’re allowed to grieve the loss of your health. I was once told that to surrender means to simply grieve the loss of something. Thus before I could surrender to the process of re-creating my health I would first need to grieve the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I simply taken the time to grieve my diagnosis in lieu of jumping straight into “lets fix this” mode?

Bottom Line:  Don’t try to cure yourself of a disease that the smartest neuroscientists on the planet can’t figure out. Don’t put pressure on a sick body to heal itself without the help of modern medicine. Feel free to use both eastern and western approaches to your medical care but don’t demonize doctors and drugs. A yoga practitioner or a naturalpath didn’t diagnose you. A medical doctor using a high-tech MRI machine did, so don’t rule them out when figuring out your long-term, medical options.

Be positive and give yourself one full year to live as healthy as possible as a newly diagnosed, unhealthy person. After that, start playing around to figure out what works specifically for you and your disease process. Then make a promise to yourself to keep doing the work required.

(And if you ever do want to talk, feel free to give me a call. 🙂

This post was edited for clarification on August 7, 2018 to add more resources on October 29, 2019 and to add links and updated resources on April 21, 2020.

Day 27: Failing at Tysabri

February 4, 2016

Tysabri (Natalizumab) is for sure, the most spectacular drug failure that I’ve experienced. But first a little background information.

Drugs, like all medical procedures, fall on a continuum. Because doctors in general want to first do no harm, whenever possible you are offered options with the least amount of side effects. It’s when those options fail that docs begin offering you crazier drugs with shittier downsides. And since you’re losing function, you start to justify the risks.

Just to review: Copaxone put me at risk for injection site itchiness and shortness of breath. Ampyra put me at risk for seizures and kidney problems. Good ole Tysabri put me at risk for liver damage, a weakened immune system and a fatal brain infection.

Before you start Tysabri you must have your baseline liver values taken and be tested for the John Cunningham virus. The JC virus is a type of human polyomavirus that by itself isn’t a problem. It’s when a person is immunodeficient or in a state of immunosuppression that JC becomes problematic as it may cause the often fatal progressive multifocal leukoencephalopathy, (PML).

Although my liver function was fine, JC titers in my blood put me at risk for PML. This didn’t mean I couldn’t have the drug, it just meant I couldn’t take Tysabri for more than 2 years and needed twice yearly MRIs.

So of course I decided to take it! I jumped at the chance to go to an infusion center monthly and risk a fatal brain infection in the hope that my slow decline would stop.

I justified this risk by going online and finding JC positive women with 62, 75 and 83 infusions under their belts without complications. Men in private Tysabri facebook groups spoke of their increased balance, energy and improved gait. Most referred to Tysabri as their “magic juice” that gave them life changing energy and stamina.

I on the other hand felt nothing. No positive benefits or negative side effects were noted and because this time my walking actually got worse, I stopped. It didn’t seem worth the risks or the $6500 monthly price tag (thank God for insurance).

After that big bomb, I took a break from my neurologist and drugs in general. It’s just too depressing to keep getting your hopes up for nothing.

I was supposed to start another drug this month but decided against it. I’m over disease modifying long shots with high price points. And besides, with a gait as slow as mine I can’t risk the possible diarrhea side effect of this new one.

You’re welcome.

Day 26: Failing at Ampyra

February 3, 2016

The second drug I failed to find success with was Ampyra, otherwise known as The Walking Drug.

Per Drug.com, Ampyra (dalfampridine) is a potassium channel blocker used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function (emphasis mine).

Potential side effects are:

  • seizure (convulsions);
  • pain or burning when you urinate;
  • problems with balance;
  • numbness, burning pain, or tingly feeling;
  • relapse or worsening of MS symptoms;

Ampyra was the second drug I took even though no one could tell me for sure how it worked. The only difference being that this one’s potential side effects were much worse.

Oh and it didn’t work for me anyway.

The good news? I didn’t have any seizures and since I had insurance I wasn’t charged the $1,500 per month retail price.

The bad news? I was slowly figuring out that MS drugs were expensive without always necessarily being effective. (A friend did report that her Ampyra experience was phenomenal. She could literally feel more electrical energy in her body as it improved her walking.)

So again, I must asked myself, Did I fail Ampyra or did Ampyra fail me?


Day 25: Failing at Copaxone

February 2, 2016

I used to have a $100 a day drug habit and I wasn’t a drug addict. The first disease modifying drug I was prescribed after my MS diagnosis was Copaxone, which was wonderful for the first three years I was on it. Although it seemed to have magical powers, sadly, it stopped working just as mysteriously.

My first MRI revealed 12 brain lesions that after a year of daily Copaxone use, decreased to nine which meant that 3 lesions were actually inflammatory spots that the drug repaired before an actual lesion could form.

At that time all was well. I had insurance so instead of paying $100/day I only paid $25/month. Teva, the pharmaceutical company, sent a nurse to my home who showed me how to take the shots and answered all of my questions.

The National Multiple Sclerosis Society explains that Copaxone (otherwise known as, Glatiramer acetate) is “a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This drug seems to block myelin-damaging T-cells through a mechanism that is not completely understood” (emphasis mine).

Like I said, it must have magical powers because no one really understands for sure how it works (see above in red). This is one of my big beefs with the pharmaceutical industry and medicine in general. Companies spend millions researching in the hopes of making billions just as long as there’s some data that shows some sort of disease modification without any side effects (well at least not horrific ones). So the good news is that taking Copaxone didn’t cause me to grow a third arm or allow blood to squirt from my eyes.  The bad news is that not even my fancy Georgetown University doctors knew why it worked or why it stopped working.

So did I fail Copaxone or did Copaxone fail me?  Hmm?

PS: If you’ve stumbled onto this blog because your doctor has recommended Glatiramer Acetate, I suggest that unless you hate needles, try it. It’s a really easy drug to take.

As for side effects? My injection sites itched slightly for about 6 months and I only had that crazy, post injection, chest tightness/difficulty breathing issue once in 3 years. Specifically that felt like a huge, muscle man was giving me a bear hug and although I could breath, it was hard to take a deep breath. When it happened I simply sat down, did some calm, yoga breathing and relaxed until it passed (after about 10-15 minutes).  And lastly, if you’re avoiding Copaxone due to your fear or needles, consider getting over your fear of needles because other MS drugs have way worse side effects.