My story…

Diagnosis

It started as skin sensitivity and tenderness on the left side of my chest and neck the day following a deep-tissue massage in late June 2019.

I brushed it off as what was likely after-massage pain, something I’d experienced before.

Except, it kept up.

Over the course of a week, it got worse, even becoming severely itchy at night, enough to where I couldn’t sleep from the sheets touching me and I drew blood from itching so much.

Then, on July 3, 2019 I woke up and my left palm was numb and tingly, like I slept on it wrong, except it stayed that way. I called my doctor’s office over coffee that morning worried that all of these symptoms were on my left side.

It would be three weeks before I could get in to see my primary care physician.

The chiropractor where I get massages could get me in that day, and after an assessment, he concluded it was likely a pinched nerve in my neck from my massage the week before. I was assured it takes a couple of weeks for nerves to regenerate, but everything else checked out fine.

There was somewhat of a relief in having that initial assessment.

Finally, my doctor appointment lead to x-rays, blood work, needle pokes, more doctors’ appointments, a round of MRIs, etc. 

My MRIs come back “abnormal”. 

That’s about all the information you get when you get that call – which makes for restful nights.

Additional rounds of MRIs resulted in my final diagnosis on July 26, 2019.

That day was a blur, time seemed to stop as I attempted to calibrate what this all meant, there was a lot of tears and a bit of a pity party, but that is about all I remember.

The next day, I got to work learning about MS – most importantly – what I could control about the disease. I was lucky enough to find a couple key resources by doctors and people who have the disease right away.

Doctors, but also patients with the disease themselves. Medically qualified. But more importantly, personally invested in keeping themselves upright and alive… Now we can talk.

You’ll find a full list of resources I’ve found helpful in the Resources section, but the main ones that got me through the first couple of days are Code Blue by Dr. Saray Stancic, Living Proof by Matt Embry and corresponding MS Hope resources, Overcoming MS or OMS by Professor George Jelinek and Dr. Terry Wahls, who is known for the Wahls Protocol.

How did I get here?

The short story is, I don’t know and parts of this process have been quite surprising.

Prior to diagnosis, I was often referred to as the ‘healthy’ one of the bunch. I didn’t subscribe to anything that looked like the Standard American Diet (SAD), it’s been years into the double digits since I had ever consumed fast food, pop, or the anything of the like, and I did all the cool, eco-friendly, natural, whatever you want to call it transitions over 10 years ago… like personal care items, etc. I was a pescatarian (vegetarian + eater of fish) for many years prior to diagnosis, and even had a year or two stint as a vegan in there as well.

I also don’t have any history of MS or AI diseases in my family, which often can have a genetic component to them.

Yet, here we are.

A conversation with one of the doctors on my health advisory team about my stress levels over a couple minute story highlighting the past couple decades, yielded some very wide eyes from her, followed by a short pause and a very stark call to action - I needed to get my stress levels under control.

So, I got to work learning all about the disease and creating a plan for how to manage life in the most holistic way possible that also allows me to manage the disease.

You can find a comprehensive list of what I eat, what I don’t, who I’ve consulted with and more here and a longer story of diagnosis here.

Deciding against Disease Modifying Therapies (DMT)

MS is traditionally a drug-managed disease. After a tremendous amount of reading and educating myself on my options, what each class of drugs do, what the potential side effects are, how long they take to even show promise for impact and what the long-term prognosis and side effects were for taking them and much more, I had a decision to make.

I should also preface this with the fact that I have a history of being sensitive or allergic to many medications. MS drug treatments also cost upwards of $30,000 to $50,000 or more annually.

After much research, the side effects were alarming. Many of the drug’s side effects mimic some of the symptoms of MS itself…like fatigue, weakness and bladder problems.

Which would make me worry is it the drug, or is it the disease?

Others are downright scary, some of the higher classes of chemotherapy drugs can cause: depression, hair loss, vomiting, increased infections, irreversible heart damage, severe bone pain, weakening of the immune system, kidney failure, congestive heart failure, liver problems, cancer, treatment-related acute leukemia and many more. One drug specifically can lead to life threatening and potentially fatal brain infections if certain unrelated antibodies are present, or becomes present at any point, in your body. As in – you’re never out of the woods and have to be tested on a consistent basis.

I’ve alway been a person that doesn’t like to even take medicine for a headache unless I really need it, let alone major medications with a long list of side effects.

So I read. And read. And read some more.

I researched alternatives, first and foremost focusing on books and other works by doctors who have MS or other autoimmune diseases.

And in the end, it came down to the fact that I am not willing to risk quality of life now and deal with the real potential of a long list of serious side effects from taking a drug that may or may not even kick the can of my disease down the road.

At this time – I have decided against using all DMT’s to manage the disease.

I still manage it, but in a way that feels right for me.