So I inject myself everyday. I’ve been doing this for almost a year now. Lots of things have changed. Lots of other things made me angry. Lots of which I’m going to write about today.
Multiple sclerosis has no cure. Instead it has many treatment options: injectable, infusions via i.v., oral and… no medicine treatment at all, just diet, exercise and rest. There are choices for every shape and size, there’s no one fits them all kind of approach. At least worldwide. Romania only has access to infusable (Tysabri) and injectable ones.
Neurologists recommend starting treatment as soon as one gets diagnosed with multiple sclerosis. The sooner you start, the most efficient the treatment will be at slowing down and delaying disease progression. That’s a thing we all strive for, especially when we get diagnosed between ages 20-40, when our life is just starting.
Before I get into the daily details of what diagnosis and treatment with Copaxone were like for me, I must point out a thing that has been bothering me way before all this rollercoaster started. As I was suspected to have multiple sclerosis, a treatment plan was indicated. But the odds seemed to be against all the people who desperately wanted to get that treatment to delay the disease from progression.
In Romania, the process of getting to treatment is a somewhat long one. You show up at one of the neurology clinics that are qualified to register pacients in the what is called The National MS Programme. Let me briefly explain.
The doctor makes all the tests needed for the diagnosis (MRI’s, lumbar puncture, visual evoked potentials, blood work, neurology consult), it turns out that you have MS or CIS (clinically isolated syndrome).
The file is then sent to the Comitee that accepts or denies your treatment request, and you are either called back to start treatment or are put on a long waiting list, because of insufficient funding or some medical reason like higher EDSS score (> or = to 8), or noncompliance to eligibility conditions.
Many people accuse the medical system of being indiferent and “murderous”, as the ones who don’t immediately get treatment and are put to wait, having to face serious dissabilities as their disease progresses one way or another.
These are young people who have just started their career, families or are just not willing to submit to what they fear is going to be a faster road to paralysis. They are scared and angry and just wanting to continue living and be an active contributor to society for as long as they can.
Of course, there are also cases of people who turned down starting treatment alltogether for fear of side effects. There are people who had been on treatment for a year or two and have decided to let it go, as it did them more harm than good, in terms of quality of life.
From my personal experience, I must admit that I have been incredibly lucky. Corruption can be high in my country. Because of it I was accused of paying my way into getting Copaxone, although I can give you my word that could never happen, as I’m totally against bribing doctors for the services they’re already payed to provide.
My diagnosis story goes like this:
>> had optic neuritis
>> got scared and made an appointment at a private clinic to get tested by an ophtalmologist right away
>> went there the second day, the doctor sent me to do a visual field test and a neurology exam, as my sight was in perfect shape, except for an inflammation of the optic nerve
>> went and had both tests, visual field came out half black (as my sight was partially obstructed) and the neurologist sent me to urgently have a 3-5 day corticosteroid infusion, as to - and I quote - “be able to keep both your eyes [...] you only have two of them, it’s your choice!”
>> told me I might have multiple sclerosis, but the thing we must deal with now is treating the optical neuritis and then we’ll see
>> went home, as I needed to breathe and get my thoughts together (I was basically scared shitless)
>> the second day, after anger and crying, I got myself up and went to the Neurology Institute I was initially sent to, got hospitalized and that very evening I had my first Solumedrol infusion >> did an MRI the next day >> a visual evoked potentials test the following day and got my diagnosis later in the afternoon >> anger, fear, crying, anger, courage and determination, more fear, more crying, a kind of acceptance >> 2 more days of Solumedrol >> my eye got better and I was excited to finally get home
>> got home, took a shower and then sat in silence for some time >> started to research my new enemy >> in a week’s time I found out all about the proceedure to get the treatment, I took my life in my own hands, called NGO’s, the MS Association in Bucharest, and finally got an appointment to the Neurology Clinic that was going to be registering me for treatment
>> another neurologist, another consultation, more blood tests to do, to rule out other causes for my 12-13 brain lesions, sent home and to come back with the results >> came back and was scheduled for a lumbar puncture 2 months later
>> did the lumbar puncture, stayed 2 hours laying flat and sipping water from a straw (possibly drank 2 liters in the process) >> bathroom brake, no headache as I was fearing >> the night passed and I went home
>> recovered from the back sting
>> a few weeks passed and I was called to the hospital to talk about treatment >> was offered a clinical study opportunity with Rebif >> got scared, as I intuitively knew I was going to refuse it, because of all the nasty side effects (I was given no prior treatment talk, no indications, just this opportunity) >> with my heart as little as a mouse, I pulled myself together and said no to it >> asked my doctor if that’s ok, and what should I do next >> the answer was that as it was my decision, they could not make me take the Rebif, but that I had to wait untill the next year to send my file to the Comittee and see if I can get a place with Copaxone, as I was too scared of the side effects interferons have: flu-like symptoms, depression, increased cancer risk, etc.
>> went home, told my family all about it, spent Christmas and New Years and it was “next year”
>> was called once more to the hospital to officially sign my treatment request >> all I had to do was wait
>> went and did some new blood tests and an MRI to know where I standed before the eventual treatment started
>> a few months passed and I received a call from the hospital, telling me that I got accepted and that I must come to start the treatment as soon as possible
>> went in, did my first bee hive sting, pardon me, my first Copaxone shot, 8 months after my initial diagnosis >> I was so scared and so grateful at the same time, as many people don’t have the same opportunity
>> a month later, SMart Choice was created, as a way to raise awareness about Romanian MSers
>> a few months onwards, the Romanian version was created - SMart Choice.RO - with big goals in mind
>> in the meantime I got accused by an anonymous reader that I was a cheat, and that I didn’t deserve the treatment as I got in front of all others that have been waiting it for years >> got very angry, wrote a response, got even more upset at the following conversation, I kept getting accused of paying my way into treatment and of not being aware of all the trouble Romanian MSers go through to get treatment
>> since then, I’ve known two MSers who have given up their treatment, I saw 2-3 people who received their first box of Copaxone at the hospital, all that in the context of waiting lists
>> I will not point fingers or try to get back at people who accused me, as I know from personal experience how much fear, frustration ad sadness multiple sclerosis can do to one’s life and emotions >> I will just keep doing what I think is right, one step at a time and in my own way, trying to raise awareness this year, and do all the things that I consider necessary for people who need treatment to be able to get it >> that plus advice, being there with all the help I can give without the serums themselves.
All the test I did, from begining to the end, were mostly payed with my own money, and some covered by the health insurance I’m taxed for monthly (Copaxone included).
So that is my story so far. Today I injected for the 350 something times, so almost a year has passed since the first dose.
To sum up all the experience I had with Copaxone I’ll just say this: bee hive stings >> hives and swelling on skin, tickling like crazy >> urge to scratch >> did not do it >> hurt when injecting >> headaches >> anxiety (of injecting and caused by the serum itself) >> blood >> anxiety >> wanting to quit, to scared of the consequences >> kept at it >> kept at it >> kept at it…
...And today I began writing this article for you. Sharing my story and possibly helping you better understand what is like to be diagnosed, live with the diagnosis and taking treatment daily.
Sincerely,
Alexandra
