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Catch 22 of Treatment

24 September 2015

Last week I had my MRI followed by an appointment with my Neurologist. I was given excellent news, actually the best news that someone with a degenerative disease can be given. Clinically my Multiple Sclerosis is stable and has been for the past three years. This also means that my Neurologist and I have stuck with the decision for me to remain treatment free. Which for me was the icing on the cake, because I honestly believed that going into that appointment I would have to bite that bullet and chose my poison.

I have only ever had one experience with Disease Modifying Treatment (DMT), and that was six weeks after giving birth to our beautiful twin girls. After discussion with my neurologist we made the collective decision that I would go onto Avonex. There were a couple of reasons we made the choice of that DMT, the main one being it was injected once a week and would work better into the mix of looking after three children under three.

Injecting myself was not something new, I had been doing so for other reasons during my pregnancy. How ever I was never going to be prepared for the size of the needle or the pain it caused when injecting. For me at the time it was what I believed was the best course of action going forward. So I sucked it up, and got on with it.

For six months I endure harsh side effects that I could never have imagined. I know the neurologist and the drug company rep warned me of flu like symptoms, though honestly until you are lying there curled into a ball shivering violently with your whole body aching. The pain meds only just taking the edge off it, until you finally fall asleep to wake up the next day like you had been hit by a truck. I don’t think I could ever understand what they meant!

As with most medications usually you adjust to the side effects and they lessen, where as for me the longer I was one the drug, the worse they side effects became. The final straw broke when I sat there readying myself to do my injection one day and I burst into tears and sobbed, because I knew what was coming and I just didn’t, no couldn’t do that to myself anymore. So again under consultation with my Neuro, we decided to stop the treatment.

Now at this point I would like to say that Avonex has proven to be a very successful treatment option for a lot of MSer’s out there. I have heard wonderful story's of success on this treatment. Also I believe that regardless of the side effects it was a good decision at the time, as we believe it held of the post baby relapse which I was categorically known to be afflicted by.

I have remained DMT free since! This has not been an easy decision to make, and I remember vividly a conversation I had with a good friend of mine earlier in the piece that asked me wasn’t I afraid that my MS would progress if I didn’t do the treatment? Well yes of course I am afraid of the possible unknown chance that I will progress, though it’s a catch 22. Do I take a medication that will cause me side effects that respectfully are worse than the symptoms I am living with and possibly relapse and progress, or do I live with my disease as it is, and continue to monitor it and wait for a relapse?

This is a decision that people with MS are faced with everyday. Right now there is someone out there weighing up their options, which drug do they chose, or do they go down the road of holistic medicine, and what if those options don’t work, what then? Decisions that no one should ever have to face making, though they are decisions that we must make. For some the treatments they chose are their only hope to stay off progression, buy more time and with the hope that there will be a cure one day soon.

A person’s choice of treatment is as individual a choice as their MS is to them. Only the person walking with their form of MS can make the decision (under consultation) of what treatment plan is right for them. Whether it be, DMT, diet, or a combination of both. If the treatment is working and is of ethically sound grounds, who are we to judge?

At times I feel like a fraud, especially when I consider my MS compared to that of others, and although my MS is very real, I consider myself incredibly fortunate when it comes to my disease progression. From the word go with my diagnosis something was very clear to my neurologist and that was, I have a very slow progressing form of Multiple Sclerosis. This allows me to manage my symptoms, which I live with daily, and am never without, while avoiding making the choice of DMT at this stage.

When I was diagnosed six years ago, there weren’t many treatment options, now today we have an ever growing number of options and I will never give up on hoping that one day, instead of the researches saying we have a new treatment, they will say. We have a cure! Yep won’t that be a brilliant day.

 

 

 

 

 

Comments (7)

Great news Amber - so proud of how you have handled the news and effects of MS. Truely inspirational xxxx

Thanks Sarah. It is important to remember that everyones MS is different. My experience with interferon is just that, mine. For yourself and others it may affect your differently. x

Great blog Amber. Good on you for choosing this route. Hopefully you won't need to consider DMT and if you do there will be one out there to suit you. :)

...not curing :( https://www.avonex.com/ AVONEX will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS. MS is a life-long disease that affects your nervous system by destroying the protective covering (myelin) that surrounds your nerve fibers.