Part of the reason that I began writing about multiple sclerosis (MS) was that I had a problem identifying with much of the information that others had already written. Often, these articles were written by doctors and were based in medical fact, but rather dry and not really describing what life with MS was like. I figured if I couldn't find the kind of information I was seeking, others may be having a hard time, too.
During my time writing on MS for the past couple of years, I have often noted that many of the comments I received about my blogs and articles were more interesting than my original piece. I decided to try an experiment and ask a question about a specific phenomenon I had noticed with my own MS symptoms (that they became much worse during a lightning storm) to see if anyone else had noticed such a thing. Sure enough, the comments came rolling in – and continue to come.
I have since posted several other blogs about similarly strange things that I experience or wonder about and have gotten comments from you that confirm my suspicion that I am not alone in my "unique" experience of MS. I have included links from all of these blogs below. Feel free to add your own comment to any of them.
I'll tell you right now that most of these things are nowhere to be found in the medical literature – these connections either haven't occurred to anyone who doesn't have MS and most of them are just about impossible to study in any formal manner. In fact, if you mention them to your doc, he or she will either say, "I don't know" (if you are lucky) or "no way there is a connection between that and MS."
While I am a scientist and believe in the elegance of rigorous studies, I am also a person living with MS. I know when something is weird with my body that could be connected to MS. I also am smart enough to listen to others with MS and deduce that there might be something there when many of us share an "unusual" symptom or sensation.
I'll let you read and decide for yourself if you are affected by any of these "off-the-books" issues. Again, jump in and let us know what your experience has been in the comments sections of these blogs.
Weird MS Symptoms and Phenomena
While I love the drama of a summer storm, the lightning that often accompanies it often makes my whole body "buzz" and tingle in a very, very unpleasant way.
I vote "yes" on this one. I have noticed that when I am in the desert that I feel much better, even at the same (or even much higher) temperatures.
This one is tricky, because the heat intolerance that usually comes with MS often keeps us shut up inside during the summer months. However, being outside on a cool sunny day can give me a lift like no medication has ever been able to do.
I actually posted this blog before I had major oral surgery to see what I might expect, MS-wise. I never had any MS-related problems following this (or any other) dental work, but seems like many of you have.
No one feels wonderful after a long-haul flight and the accompanying jetlag, but I wanted to see if anyone had actually had a relapse after a long flight. I had a pretty major relapse involving some pretty dramatic pain and optic neuritis after a flight to Russia. Turns out many of you have also had a similar experience. Coincidence? Maybe, but maybe not.
This is the most "mainstream" of the ideas here – pretty much everyone acknowledges that people with MS are heat intolerant. However, I think it would surprise the non-MSers to know that many of us start shutting down before they would even think of wearing shorts outside.
Self-help books have been written on this subject, but no scientific studies really support the idea that there is a link between what we eat and how our MS "behaves." I certainly have cut several things out of my diet and noticed improvements in my symptoms. I don't know if it is affecting disease progression, but feeling better is a good enough reason for me to restrict food choices.
Pretty much everyone in the medical world says that these types of twitches are NOT associated with MS. While they are much, much more common in people with ALS, looks like lots of you have had them, as well.
This goes beyond the tingling of parasthesia. Way beyond. Happening only at night, my feet often feel like they are truly on fire, which can keep me from sleeping. However, they feel normal to the touch. Weird, but clearly not unique, as many of you report the same thing.