Reading Through Your MS
Are you newly diagnosed? I remember that when I started feeling sick, and once I was diagnosed I read everything that came my way. I read every article, no matter how obscure or unreliable. I looked for every website that spoke about MS. I even scoured the government clinical trial database. Yes, there really is a government database for clinical trials. Every (real and credible) clinical trial in the United States for every disease is registered in the clinical trial database. Just type in your disease of choice and you will find every clinical trial in the country.
Go ahead, read away. Devour information at will. Reading up can do wonders for feeling some semblance of control over this disease. I am one who believes that information is power, as long as it is credible. And that brings me to my first point. The flood of information, while useful, can be damaging if not looked at with a discerning eye.
We all know that there is loads of misinformation out there and when we are sick we can become more vulnerable to its lure. It can be easy to decide, for instance, that you don’t want to take the traditional meds because articles A, B and C said they have ‘dangerous’ side effects. Or you might say, ‘This website has loads of people who have been taking this other drug and scrapped their injections with no problems – I should too!”
I have to admit. I was this person. For the first year and a half after diagnosis, I took Low Dose Naltrexone instead of the Rebif that my neurologist had prescribed. I had believed – because I wanted to and without any scientific evidence – that this would be better for me than the Rebif. Fortunately, my husband asked me to promise that I would start taking the Rebif if the LDN did not work.
A year and a half passed and I felt like I had beat the system. Soon though, time ran out and I had another relapse in the fall of 2008. I tried a clinical trial as soon as possible, ever afraid of those pesky injections. The clinical trial did not work out, and in February of 2009 I took my first injection of Rebif. It had a drudgery of side effects but it worked. If I could go back in time, I would have started the Rebif in the beginning, but I was in denial and I used baseless claims by people, anecdotal evidence, to fit the information that I wanted. Now I base all of my decisions on science and long discussions with my family and doctors.
Clinical Trial Database
This brings me back to the government clinical trial database. If you are looking for an answer that goes beyond the basics, if you are a person who wants to try something new for your disease, or if you just want to read up on what we have in the pipeline about up and coming treatments, the clinical trial database is a great place to start. Look around – you will like what you see. The knowledge and treatments for MS have been progressing very quickly. This is a real time resource.
The knowledge of MS moves so quickly that I have found myself almost completely searching online for information. Another favorite site of mine is MSIF.org. This is an incredible resource for finding out what is going on in the scientific community in the United States and beyond.
It is easy to get locked into looking only within the US for information, but there are so many interesting aspects of our disease that are being worked on around the globe. MSIF tends to be a rich resource. They have great newsletters that keep you up to date on recent clinical trials, international meetings and discoveries.
Next page: three more MS resources.