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

Heat & Needles - A short MS summer story

Looking outside my window today, I might think that winter is coming (GoT daydreamer here!). The sky is gloomy, the air is full of cold humidity, but I know it. It’s summer. A grey day of rain can’t fool my MS. It knows best.

I’ve never been so much of a summer fan. Not even in my teenage years. All the “let’s go to the beach and get tanned” had no effect on me, as I always prefered the cool mountain breeze through my hair. There is so much more to do and explore, and the scenery tops it all! Being on a moutain cliff and feeling all that space around, gives me a sense of freedom like I’ve never felt anywhere else.

Eight days from now I’ll celebrate the first year since I met my MS. Of course it had to rear its head during the most wonderful time of the year for me: blazing hot summer! The two loves of my life came together. Yay! MS made me dislike summer so much more. Especially when I have to self-inject.

Guess what? Needles aren’t my personal favorites either. But I made friends with them. After more than 100 days of injecting I can finally say that we know eachothers highs and lows. It’s my adrenaline shot and I’m beginning to feel it working. I don’t mind the sting so much anymore, as I gotten used to it. I breathe and I know it will pass… And then I go take a second morning shower because the 34 degrees outside soaked my t-shirt! And it’s not even 11 a.m.!

So, living at Winterfell sounds like a very good option! Seriously now, I could stand frost bites better than dripping foreheads all day long. That’s why my favorite season has always been winter. It’s where me and my MS find common ground. Plus it makes a good match for my daily needles. They are both cold as ice. Hence the picture in this post.

Looking back at my window, winter has come at least a little bit. It’s raining and the wind is slightly moving the tree leaves. And so my MS is pleased. As am I. We are friends again.

Sincerely,

Alexandra

P.S. Question: How are you handling the summer heat? Does that impact your MS in any way? Share your answers on Facebook, Twitter or in a comment down below. Thank you for visiting!


(Image Credits: Thank you #Soli Art Photography! You made my story come alive. Beautiful image!)