My column this week is titled: The Online "Nay-Sayers"

Here's why it may be a good idea to avoid the Internet and/or online resources when investigating MS and/or Fibromyalgia!

I am a patient, not a doctor. At this point in my life I have found a combination of medications that  I feel work for me. I made the mistake of writing a post about this (in conjunction with an updated medical appointment with my Neurologist) in Facebook and had a couple of people write back that Avonex (and all of the other Interferons/CRAB drugs) doesn't work and that combining it with LDN is a bad idea. You know what? They're most likely to be WRONG (for me, it DOES work. It may not for all but it does for me). Either way, it was an exercise in futility and just led to a LOT of frustration (and tears) over absolutely nothing.

I suppose this just shows how little you can trust what you read online. To quote my neurologist (Dr. Maria Houtchens from Brigham and Womens' Hospital) on this subject:

"...Just say that there are many studies that through the years showed the exact opposite results and they were not even sponsored by drug companies. The patients need to have hope that this illness can be controlled. Many studies support this hope. In the end, taking the medication is a personal decision for every patient. And even if it proven beyond doubt that these drugs do not change the overall disability, or morbidity, the fact that the patients with MS are less likely to suffer exacerbations while taking therapies, which is an undisputed fact, is in and of itself, a wonderful thing. Going through exacerbations is best to be avoided, as it is very unpleasant, in a way that those without MS can't ever understand. The drugs work for some patients, do not work for other patients, and no two patients are the same. I would advise you to not waste your time writing a response. You can't change this person's mind, and it is not worth getting worked up about it in the process...."

She (my Neurologist) was right in my opinion.


I am adding this because I spend a LOT of time going over things that are Multiple Sclerosis-related. For anyone wanting to hear/read more about Fibromyalgia - I apologize. I have had MS for so much longer. The "world of Fibromyalgia" is still a little new to me. I am in a Sunset Tai Chi class (the teacher's name is Ramel Rones. He is WONDERFUL in my opinion) for people with Fibromyalgia. One of the people in my group is so negative all the time (he/she is truly upsetting to listen to). I try to cheer him/her up but I have had to back away and give up. Unfortunately, you can only do so much for other people. Allowing too much negativity into our lives can be poisonous to us. I feel very bad for this person but really hope, for his/her sake, that he/she can someday develop a more positive outlook. I have not really run into a lot of online problems with Fibro because, to be honest, I still do most of my online research on MS.

One other thing I want to mention here is something my mother brought up in a comment in one of my writings about MS and Fibro. I read what she wrote and thought “hey – I could not have said this better myself” so I am just quoting what my mother wrote right here: “… I made the mistake of reading online messages that were mostly from people with the most frightening stories to tell. Advice to the newly diagnosed: do NOT read listserv MS group messages. They are mostly from those with the worst cases and will only scare you to death. As Yvonne has said, each person with MS is different. Also there have been great strides in medication so there are actually things that can help now that didn't exist 20 years ago. I was there when the doctors told her that she "might" have MS. They also said that if she had to get it, the timing was good because the first drug for MS, Betaseron, had just been approved. Before that there was nothing.”

This is not just true about MS; I think you could probably say this about many medical conditions. If you Google something, chances are VERY good that you will find a lot of “worst case scenario” stories.

If you just received a diagnosis or just found out someone you care about has something, you are probably not going to like what you find online.

Labels: Avonex