When you’re first diagnosed with Multiple Sclerosis you’re often plunged into a world of unknowns where scary things are happening to your body. Your thoughts become clouded as you desperately search with tunnel vision for answers and some means of stopping your symptoms that have so rudely interrupted your life. Finally you find something that works; your symptoms let up and it’s like a burst of fresh air that blows away the clouds in your mind that have been hiding all logical thinking. Your life begins to move forward again and you naturally attribute (perhaps rightfully so) this to whatever medication/treatment you have found. This is where the problem arises; some people begin to preach this newfound medication/treatment as the cure-all for MS.
For those of you with MS who have been living a healthy and steady life on a medication, you may have run into this. You bump into someone who claims the “cure” is whatever medication or treatment they are on and what ever you are on just so happens to be dangerous for reasons X, Y, and Z. Clearly they are right though because look at what it has done for them! The medication you are on did not work for them so your medication is just some sort of scam! Does this not bug you? Tell me it does not drive you mad!
What I try to explain to people is that “MS patients are like snowflakes; no two are alike”. The disease affects us all differently and what makes symptoms worse for one person may not have any affect on another. Just the same, what helps one person might not do a thing for another. We are all different. There is no “one size fits all” treatment for Multiple Sclerosis. Everyone has to discover their individual regimen that stops their disease from progressing and improves their quality of life. Some people swear that CCSVI (chronic cerebrospinal venous insufficiency) is the cause of Multiple Sclerosis. The treatment for CCSVI is the only way to improve (or cure as some claim) Multiple Sclerosis, yet many people have undergone this treatment with no positive results what so ever. Similar claims have been associated with dieting, various pills, and of course DMD’s (disease modifying drugs).
These are just a few of the many examples but let me be clear; I am not saying that none of those things work. What I am trying to say is that if something works for you, understand that it does just that; it works for you. It’s not going to work for everyone. Tysabri and Acthar (ACTH) have changed my life whereas I know that those very medications do nothing for other people, in fact, they may even have caused them harm. So you will never hear me say “Tysabri works”, instead I say “Tysabri works for me” because I know it’s such an individual solution.
Look at it this way; there are so many religious beliefs and you have chosen to follow one. It’s a very personal decision right? Some religions (or maybe all) just don’t work for you but you have found one set of beliefs does that does; it works for you. Everyone has their own belief system that works for them and though many others may share that with them not everyone does. Are you seeing how this analogy ties to MS treatments so far? Now imagine this; you have found your own religion, what works for you, and then someone comes along and claims they have “the right” religion for reasons X, Y, and Z. Would you not be offended?
We all know our own bodies best and we all know what makes us feel best. If you feel that the cold (for example) helps your MS don’t criticize those who say it hinders theirs (or vice versa). If you know that a treatment has changed your life and someone else claims that very treatment does not do anything, simply tell them that we are all different instead of arguing about it. There are medications I take that I am sure don’t actually improve my symptoms but if it psychosomatically makes me feel better I am going to take it. I won’t preach any of my crazy “beliefs” but instead I will tell people “this is what helps me”. If I discover a medication that really does improve my symptoms (without a shadow of a doubt) I will still tell people “this is what works for me” because I am well aware that what works for one does not work for all. I see so much arguing online because people do not realize this fact. If we could all take the time to understand this, there not only would be less negativity among the MS community but we would be able to better treat the disease because everyone’s MS responds to a different mechanism of action, not just one.
What works for one does not work for all.