Multiple Sclerosis Diagnosis and Treatment Options - My Story in Romania

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

Reasons Why Fear Makes us Aggressive Because of Multiple Sclerosis & Why We Must Fight Social Injustice

All human beigns feel fear at one point or another durng their lifetime. But so do other mammals and creatures on this Earth. Even plants do it. So why do we sometimes think we have the right to be aggressive only because we are afraid and frustrated with our MS or with situations that correlate at some point with this condition?

In Romania, there is a strange case of social injustice that happens right before our eyes. Each year, there is a Government budget being decided for each of the ministries administration needs. Healthcare is underfunded for all that it needs to do and take care of, including the National MS Treatment Programme, which enrolls MS patients on lists, in order to receive (or wait for) the treatment they need.

Given this situation, many sufferers are left behind and without treatment for many years to come, only making their condition worse, depending on the state they are on or on the evolution of their MS. This situation has numerous ripple effects, from the person’s own health, to the national GDP (PIB in some countries) and society’s efficiency at large.

It’s pretty simple actually: many people get diagnosed with MS between ages 20 and 40, that period of time when one is supposed to be at the most active stage of life, when you get on top of your career, when you start a familiy and basically just when you are at your most productive, and paying the most social contributions to the state. 

And all of a sudden, because you are not given treatment, you risk not being able to work because of your growing dissabilities. You are no longer able to contribute to the national GDP. In the situation you get worse, you’ll need a caregiver, person which will also need to be payed by the state to take care of you.

Instead of focusing on keeping people functional as much as possible, they put people on lists and in the long run end up paying even more money to and for them, resulting in less money to go around next time, and so the problem goes deeper and becomes worse. Exponnentially worse.

The point where I was headed with this article is that in this context, fear causes even more trouble than just physical dissability. It destroys emotional and psychological wellbeing. It trashes mental welbeing not only of the person that has MS and no acces to treatment, but of the people around them as well: family, friends, life partner, etc. The emotional wellbeing of a person diagnosed with MS is very delicate. I have written about it before and I will write about it again.

These people enter a downward spiral that puts them on a very powerful deffensive, and they become aggresive to anyone who can be blamed for their tragic situation. Knowing the corruption that still exists in this country, they get to think that all the people who do receive treatment are bribing for their meds, surpassing everyone who has been waiting for many years.

Given the eligibility criteria in MS, and trusting in the competence of the medical specialists that are taking care of this illness, I can’t help but wonder what’s happening here? Why aren’t these people receiving their rightfull treatments? Is it dependent on country area, on neurologist, on MRI’s or on what? I accept that there are cases of people who are influent enough to pay extra to get in front, but that’s not a general rule.

This year I’ve once again saw what extreme frustration and fear can do to people in this situation. They just want to live a normal life for as long as they can, and they are being refused this simple human right. 

Here at SMart Choice Lifestyle, we’re going to start doing something for these people even sooner than we planned. We will investigate the right ways and strategies on how to do it. We already have some ideas in mind and were planning to act on them later this year. But this has got to start sooner.

In due time, making sure that we have a strong strategy in place, we’ll get there. You know what they say: “Rome wasn’t built in a day!”. We are aware that MS is a condition that does not get well with time, but we take that risk in orded to do things right.

Thank you for your understanding and please share this article so that many more people get to know how things are here in Romania for some people living with MS.

Subscribe to be sure you receive every article we publish.

This was a collective article, to let you know that we hear you. As fellow MS patients, we understand what you are going through and plan to make a change. Stick with us, have faith and let us know if you want to help.

Thank you for your understanding!

Wishing you the best health,

Alexandra & the SMart Choice Lifestyle team

Treatment or No Treatment, Multiple Sclerosis Is Unpredictable

Life is by default full of uncertainties. You can’t predict what is going to happen next. You can forsee for a little bit, but prolongue those thoughts and you wind up in full-blown anxiety mood. So most people take life as it comes and make what they can of what it’s been thrown at them. It’s all just a gamble.

When multiple sclerosis gets into the picture, things spice up a bit.

It ads a bit of adrenaline rush to everyday living. Its unpredictability and insidious relapses can get even the most positive person fearful, angry and feeling stuck. Some people loose control, feel depressed and fully dominated by their condition.

MS is the kind of illness that manifests differently to each and every person. It’s uncurable but manageable. Nowadays, there are 10 treatments available on the market. Thinking now that MSers have it all solved for themselves? Think again!

Although there are many disease modifying drugs or DMDs, their accesibility is limited by all sorts of factors, ranging from high costs to being aproved or not in a certain country and reaching to the waiting lists of Romania.

A Quick View Over the Romanian Case

There are 2 milion people who have MS in the whole world, and aproximately 10.000 of them are found in Romania. Of the almost 8000 that need treatment to stop the disease progression, there are about 2700 individuals actually receiving treatment on the National Programme. The others are told to wait for funds to be available in order to pay for their costs.

People are then faced with the biggest fear of them all: “Will I survive? Will I get through this? Will I finally get treatment?”. Add this to the first two unpredictabilities that I metioned before and you have the conditions for a full-blown crisis. 

People get angry, depressed, more angry and go pick a fight with anyone who rises above them. They become judgemental and backlash at any other MSer who had the opportunity to get treatment. But they are only suffering and scared. You would be too.

My Treatment Story

I am one of the individuals that got into treatment fairly quick.

Diagnosed in July 2014, I took all the tests required for a proper diagnosis. It was confirmed that I had MS, and an EDSS score of 1.0, indicating that I have minimal damage done to my nervous systems, but the disease is there, active.

Then I was offered the opportunity of entering a clinical study for Rebif, one of the interferons used to treat MS. I never had a discussion about treatment options, which one is more appropriate to my condition, which side effects can I tolerate better and so on.

At my own risk, I was assertive and I turned down the treatment. I explained the decision to my doctor and asked if and when a new treatment oportunity will be available. I was told that for 2014 there are no more funds, but the Comission meets again in March 2015, and I can submitt my file on February to see if I get approved. And then I waited.

Christmas came and went. 2014 made way to 2015 and that February I went to submitt my file and sign the agreement for the if-to-be-approved treatment. My option was Copaxone. I discussed the whys and whens with my neurologist and we agreed that this was the best option for my situation. And then I waited some more.

At the beginning of March I received a call from the hospital asking me to come and prepare for treatment. My file was approved. The Comission analyzed my file and they found me suitable for treatment. The exact reasons for such a quick approval were not made clear. Only that I was eligible for treatment, given all the conditions of my illness.

And I went to the hospital to get my first dose of Copaxone. Happy (my mother will not have anguish and nightmares anymore) but anxious, I entered the room and was quickly introduced to the AutoJect, the treatment itself. I was told when and how I must administer it, how I needed to rotate the injection sites in order to take care of my skin, and lots more. The whole thing lasted about 20-25 minutes and ended with my first shot, then and there.

As I saw the nurse coming near me with the first dose, my anxiety went through the roof. I got a strange kind of fear. A menacing fear, one that threatened my whole existence. The thought of “why do I have to do this? I don’t wanna do it! why me?” came to mind. And then the needle came out. And the first sting began. “Lovely” moment. If you’ve ever been hit by a bee hive, you’ll understant this first sensation.

The alien substance met my immune system then and there. We’ve been “friends” now for… 127 injections. 127 times the needle went through and knocked my T-cells out. But in doing this it wacked me out to. Sometimes I get sleepyer than usual (add THAT to fatigue!), I get angry and agressive for no particular reason and I get welts and hard knots under my skin. I itch and feel drowsy. Sometimes I get energized after the shot. But all the time I am reminded of MS.

The Unpredictability Continues for All

Unpredictability is still there though. DMDs don’t cure MS. They only slow the progression and reduce the relapse rate. But without them the risk is way to big to take. The cost is the main problem. By doing a simple Google search, you find Copaxone as being the cheapest DMD in Romania, costing around 800 euros (3399 lei) versus Rebif, which is more expensive 1037 euros (4599 lei). And that’s just for one month. More people need to be able to have access to treatment.

There is an urgent need for funding and of proper management of DMD costs for patients with MS in Romania. It is unacceptable that people have to go through lists and waiting while their disease progresses. It’s scary. It’s like falling of a cliff with no one there to catch you. Bungee without the cord. Find your own metaphor. But the truth is this: the more time goes by for people who are not receiving treatment, the more indirect costs there will be with the care and rehabiitation that they will eventually need.

Call-to-action. Let’s help!

Given this situation, I challenge you to stand up for these people. I challenge you to volunteer in raising awareness and let the public opinion know what multiple sclerosis is and what needs to be done in order to keep the health of the people who want to live a normal life, to work, to love and to be happy. You all want the same things. Let’s help.

Feel free o ask us questions about multiple sclerosis, about ways you can help us raise awareness and funds and much more. First, aknowledge there is a problem. Then share. Then join us in the fight against the social unjustice being done to these people.

Thank you for reading this article! Use the buttons at the beginning of this article to share it so that we can spread the word. MS can be treated.

Sincerely,

Alexandra & the SMart Choice Team

The Right to Hope. A take on Romanian Multiple Sclerosis

So I received this comment (scroll down to read it) that I resonated with at a deeper level. Most people would have deemed it as offensive. I’m not being a hypocrite. At first, it did make me feel a bit offended. But then I stopped to think for a moment. And I began to understand this person’s point of view. In fact, I recognised some of the ideas as one of my own.

Every person with MS has a story. Every person with MS has a voice. And that voice needs to be listened to. That person must be understood, helped and appreciated for the unique human being he or she is.

I refuse to accept that people can be left with no hope. I will not stand and watch as just one single individual gets treated unfairly. I see the fear, I see the anger, I see the frustration. I can even see the despair some might come to have. And I understand ALL of that! God, how I understand it!

It’s a real life fight for survival, not the kind you get to see on TV, in movies or in overdramatic news reports. In Romania, some MS’ers  are stuggling to get through another day, another hour. And there’s ignorance! So much ignorance! The public opinion is unaware of this much suffering. People blame. People point fingers. People just don’t care.

And the fear, the anger, the frustration and despair come again. Why these feelings you ask?

Because their HOPE is threatened. Their FUTURE is NOT CERTAIN, even more so with a diagnosis as multiple sclerosis: an invisible, incurable and unpredictable illness. These people are told to wait on a list. To wait for the treatment that might help them. To wait on a bloody list as they hold on for their life and gasp for air at the slightest symptom. To wait on a list as their families see them struggle. As their friends fail to understand them. As employers treat them as replaceable parts in their business motors. As the Government treats them as “mere statistics”, as “too few cases, money not justified”. There aren't enough funds for all patients and many have to be left untreated, they have to wait. As the society judges people who seem different than the norm. As the media is filled with surgical enhanced models, sex scandals and shallow content, just because it “brings more audience”.

MS is cruel. But you know what is even crueler? IGNORANCE! Ignorance and criticizing what you don’t know or don’t understand.

And then they ask “who are these MS’ers and why are they bitter, angry and have a victim mentality?”. The truth is MS'ers are hurting inside, they are just like you all: wanting to be understood, apreciated and heard. To have families. To have jobs. To be productive. To be loved. They just want to live normal lives. And for that they need access to treatment.

Help us raise awareness for multiple sclerosis. Help us stand tall and dignified. Share this article and ask us questions.

ALL people have… the right to HOPE!

Sincerely,

Alexandra Celic