Tag: diagnosis

Before

Before

Before (adverb)
during the period of time preceding (a particular event, date, or time)

Although some might say at eight years since diagnosis, and nine since the symptoms started, that I haven’t been at this multiple sclerosis thing for that long. BUT I can no longer remember before the MS, or bMS as I like to say.

There is a dividing line from before the diagnosis to after the diagnosis. And it happened sort of like when you stand on the line at Greenwich mean time in England (worth the visit). A literal, dividing line between before and after. The time before I walked into the hospital in Basel and the time after I walked out of the hospital.

Most days I tilt my head and wonder if that “thing” I’m experiencing is from the multiple sclerosis or being in my late 40s. And other days I’m completely fine. A few years back a doctor told me that eventually, as my peers aged, we would all be on the same playing field. Cold comfort when you’re 39 years old. Or when I say to my dad “this is bothering me” and he responds with “welcome to my world.” Well yes, but I’m not 71!

The after feels a bit like experiences from childhood. Do I remember from memory or from pictures? Many befores seem like a lifetime ago.

What are your significant befores and afters? Please leave them in the comments.

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Treatment

 

 

Treatment planTreatment (noun)
a session of medical care or the administration of a dose of medicine

Today is the eighth anniversary of starting treatment for multiple sclerosis. My math skills are fuzzy at best, but if you figure 52 injections a year times eight years, that’s 416 injections, give or take based on illness, birthdays, etc. But for the most part, weekly injections, for eight years.

At the time of my diagnosis there were only injectables or infusions, not the oral meds there are today. One of the things I’ve learned both professionally and personally, often times knowing what you don’t want is just as, if not more important than, knowing what you do want.

Given what I do for a living, I was able to review the clinical trial and usage data and whittle my list of treatment options down to what I was willing to do. Although my body was in turmoil at that point, I knew I wasn’t willing to inject more than once a week. Inject, it’s an odd concept. I also knew I couldn’t do nothing, or only treat holistically as some recommended. That.was.not.an.option. Complementary, definitely, alternative, no way.

For most people the notion of doing harm to yourself isn’t ingrained. Having to do something as violent as an intramuscular injection, that causes flu-like symptoms, even once a week, seemed so violent to me. I could easily do it to someone else, just like I loved watching brain and heart surgery, but to myself? Hell.no.

Once I decided on a course of action, I ran it by my neurologist here in the U.S. before setting the wheels in motion in Basel. We hadn’t anticipated a delay in starting treatment, which I’d mentally prepared myself for, but another week more separated the start date from what was originally planned. I didn’t fully grasp the whole long distance marathon thing at that point, given I never endeavored to actually run a marathon.

The onset happened end of March and diagnosis middle of April, by the beginning of June 2009 my body was so sick, that starting on treatment was not only a way for the physical healing to begin, but a way to take “control” over a life that felt very much out-of-control. Starting treatment was also a step in the life is unpredictable direction. One of the worst diseases a type A control freak could get IMO. I was incredibly scared of what was next.

When the decisions were made and drug ordered, J followed by N came over to be with me. Although it was one of the worst times in my life, looking back it also showed me that I can ALWAYS come out on the other side and be ok. A few more bumps, bruises, and warts, but ok just the same.

June 5, 2009 was 1/4 of the injection (you increase the dose over four weeks until the full dose). We practiced on an orange and these little pin cushion type contraptions. In case you’re wondering, none of them ACTUALLY mirror that of injecting yourself. Even hospitals in Europe don’t have the same level of aircon that we have in the U.S. and sitting in the little exam room, learning my new skill, and then having to execute, left me light-headed and near passing out. The first injection was administered by the nurse. We would try again the following week. I needed a STIFF drink.

A HUGE shout out to nurses, because the nurse I worked with, A, at the University Hospital of Basel’s neurology clinic, was beyond amazing. She took one of the worst times in my life and made it as tolerable as it possibly could be under the circumstances. I was 4,000 miles away from home, in a healthcare system vastly different from ours. I will be forever grateful to her.

When I moved home to NYC, she was one of the last stops I made to say good-bye. And when I returned to Basel last year for vacation, she was one of the first stops I made. Going back to where I was diagnosed was bitter sweet, but seeing her was a happy occasion. When you live in an area with a large expat population, your patients come and go. She told me that I’m one of the few that has kept in touch. I couldn’t imagine not.

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Diagnosis

Diagnosis

Diagnosis (noun)
the identification of the nature of an illness or other problem by examination of the symptoms

Two weeks after my time in the hospital and being on all kinds of medicines (oral steroid taper, sleeping pills, stomach pills, you name it pills) I was told to head over to get the “official” diagnosis. I had a lumbar puncture that required about two weeks to culture and confirm what the doctors already suspected.

I spent those two weeks in between “knowing,” knowing that my life was drastically about to change. But I was also so sick at this point that I could only focus hour to hour, which sort of kept me from “going there” as much as possible.

Standing outside of the hospital, it was like something out of a movie. It was a gorgeous spring day in Basel. The birds were chirping, kids were on their way home from school for lunch (yes you read that right), people were running errands, and heading to or from work. The world around me was moving, yet I felt like I was standing in cement and couldn’t move.

I stood outside of the building for a good 15 minutes before mustering up the energy to walk thru the doors, knowing that my life would change when I did. A friend offered to go with me, but I felt like it was something I needed to do on my own. Maybe taking back a little control in a time that was so very much out of control (I HIGHLY recommend taking someone with you to something like this. HIGHLY!).

I was told to find the resident on duty, which in hindsight seemed quite odd, as usually you would meet with a specialist in private. I approached the nurses station hoping that someone spoke English so I didn’t need to go through my usual repertoire of nursery school German.

The resident on duty came to get me a few minutes later and we sat in some chairs by the elevator. I can’t recall whether or not she introduced herself, I just remember watching people going on and off the elevators. And I kept thinking, how weird is it that we’re doing this here and not in an office. Out of the corner of my ear I catch her saying “we’re 99% sure that it’s multiple sclerosis.” I think she might have referenced something about following up with the neurology clinic, meds, and a few other things, but honestly I have very little memory of the whole thing. I guess that’s the way our brain protects us from bad things.

As I was walking to the elevators I watched people getting on and off of a few minutes earlier, I was numb. I had no idea what would happen now. As I stepped back outside into the beautiful spring day, I laughed about what and how the previous conversation had unfolded. It occurred to me that it was April 15 (tax day in the U.S.). And then, in the middle of a street from the 1100s, I called home to New York and cried.

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Onset

onset

Onset (noun)
the beginning of something, especially something unpleasant

It was the summer of 2008. I had just turned 39 and was in the south of France on vacation (living in Switzerland) with a friend. I’d been working dozens of hours a week and desperately needed a holiday. Unfortunately southern Europe was experiencing the worst heat wave they’d had in over a decade. It was 100 degrees which made it hard to do anything outdoors. We hid in shops, movie theatres, and cafes.

We were staying at a lovely winery and while we did taste some of the local fare, by no means were we walking around squiffy. One night I went to bed fine, and the next day I woke up with a numb butt. I remember asking my friend if that had ever happened to her, it had not.

That started my odyssey for a diagnosis. Flash back to a few years earlier and I did crisis work for a multiple sclerosis medicine that was removed from the market and re-released after proper precautions were put into place. In the deep recesses of my mind, I knew something was wrong aside from the everyday aches and pains we experience.

The next months would come with experiencing weakness in both legs, more numbness, and a lot of fatigue. Fatigue so bad that after sitting in a movie for two hours, I would walk a dozen steps and need to sit down on a bench.

I saw my GP, chiropractor, and acupuncturist. I knew that the weakness in both legs at the same time wasn’t sciatica since I have experience with that. Your sciatic nerve is on both sides and not connected. So it’s rare that would you have it bilaterally.

My GP did all kinds of blood work to rule out potential diagnosis, which is still currently the way you also rule IN the diagnosis of MS, including lumbar puncture. Tests for Lupus, lyme disease, syphilis (latent disease can cause neurological symptoms), and a brain tumor (more on this later).

The GP finally referred me to a general neurologist who did some basic motor skills tests and said that I was fine. In the U.S. I would have pushed for more test, and they likely would have at least done a brain MRI, though it may not have shown anything at that point.

In December I had an eye issue where my eyes had trouble focusing distance. No problem seeing up close, just distance. I saw an optometrist (no issue with my prescription) and referred to the eye clinic at the University Hospital. I spent NINE hours at the eye clinic one Saturday. It was like something out of the 1600s, literally. A few days later I met with the attending physician who said I likely had strabismus. Ok, so while my dad had it as a child, I’d just had an eye exam for my contact lenses a few months prior. So NO, it wasn’t strabismus, but rather like when you get a weird rash and the doctor calls it “contact dermatitis” because they have no idea what it really is.

I went back to the general neurologist who now thought it would be good to get a brain scan. Upon receipt of those images, his next idea was to do a lumbar puncture. Playing a doctor during the day, I knew there had to be something in between a brain scan and a sticking a HUGE needle into my back.

Between the results of the brain scan and the eye issue, this was sufficiently enough to freak me out. I was going home in a few days to have knee surgery (a story for another time). So I put my dad on the mission to get me into see a neurologist back home that could help me sort the issues. Two phone calls and 20 minutes later I had an appointment with one of the top neurologists in the U.S. who I still see to this day. I call it mobilizing the Jewish healthcare mafia. We ALWAYS have a doctor to recommend.

Two days later (NYC) I was in the neurologist’s office, images in hand, and parents for support. He reviewed the images and said he saw a few more tiny brain lesions, but nothing that would give him cause for concern. He did some motor skills tests and since I was asymptomatic at that point, he didn’t consider it MS. Phew! Dodged a virtual bullet. He gave me his card and said call his mobile any time and we were on his way.

Three months went by and all was fine. Then the last week of March I couldn’t get my feet warm at all. Warm water, double socks, heating pad. My feet were constantly cold. And over the course of the week I went numb from my feet up over my stomach. Not paralyzed, but numb. I could still walk and no one was on the wiser.

I finally called my GP and although he felt it would subside it was probably time to go to the ER. I took a shower, packed some clothes, and hopped on the tram to the hospital. In hindsight I probably should have waited to text my dad because it was 10a where I was and 4a here in NYC.

They took me back into a room and I immediately called the neurologist I’d seen in NY a few months earlier. It was really important for me to have someone back home in the healthcare system who a) knew where I was and b) could be connected into the treating physician. Turns out I was at the hospital where the top MS institute in Europe is located.

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