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NAYSAYERS: why I (try to) avoid them

Updated on January 14, 2016
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The online "Nay-sayers"

I have been asked to split up what I am writing into sections so that is what I am starting (and/or attempting) to do here.

As I have written in many other spots throughout this article; I am a patient, not a doctor. That said: I have found a combination of medications that 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 Women's 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 imo) for people with Fibromyalgia. One of the people in my group is so negative all the time (he/she is trully 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 which 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 you are going to see a lot of “worst case scenario” type 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.

Conclusion(?)

This (entire section) is not just true about MS; I think you could probably say this about many medical conditions. If you search for something online 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. Please keep this in mind if you ever do decide to search for something on the Internet. Also know that, if you see any type of service announcement(s) in the media regarding a health condition where donations are being asked for, the worst possible cases are often shown in order to tug at the heartstrings of people who may have money to give.

Thank you!

Thanks for taking the time to read this. If interested please check out my other hubs (I used HubPages to help me draft for my book. I really do hope this is helpful to you).

~Yvonne

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    • Yvonne Decelis profile imageAUTHOR

      Yvonne Decelis 

      3 years ago from Boston, Massachusetts

      Thank you very much Beth37! I really hope so too... know quite a few people with both conditions.

    • Yvonne Decelis profile imageAUTHOR

      Yvonne Decelis 

      3 years ago from Boston, Massachusetts

      Debbie - I get you (sorry I took so long to reply to you here btw). I don't want to see "A Dream is a Wish..." because I know it will depress me and make me sob like crazy.

    • profile image

      Debbie Ramsey 

      4 years ago

      So true Yvonne. My first MS nurse was horrified when I was just diagnosed and scared myself watching Annette Funicello's story "A Dream Is a Wish Your Heart Makes". That was like 17 years ago

    • Yvonne Decelis profile imageAUTHOR

      Yvonne Decelis 

      4 years ago from Boston, Massachusetts

      Amen to that. My mother said the first thing she did after I was DXed was to google MS. Needless to say, that (and my first (bad) Neuro) did not help her outlook at ALL.

    • FlourishAnyway profile image

      FlourishAnyway 

      4 years ago from USA

      You are absolutely right. I was told to stay away from the online "support" forums for people with MS. Naturally, I wanted to see what they were all about so I peeked and it was filled with very negative people who had war stories and were devoid of any grain of hope and positivity. Attitude counts for something. I vowed never to go back and to chart my own course.

    • Yvonne Decelis profile imageAUTHOR

      Yvonne Decelis 

      5 years ago from Boston, Massachusetts

      p.s. I will add to this at some point too. I am in a study for Tai Chi classes for people with Fibromyalgia and I am getting it from other Fibro patients too (the negativity one of them has is almost crippling.)

    • profile image

      Beth37 

      5 years ago

      I was thinking this was for Fibro, Im so used to associating you with that as i have it too, but rereading, this is just for MS I believe. I hope you help a lot of ppl with this.

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