What If It's Not All MS?
I was diagnosed with Multiple Sclerosis (MS) in August of 2010 at the age of 20. I have been told by more than one neurologist that I have a pretty "aggressive" case of MS, so since the time of my diagnosis, I have pretty much received all my medical care through a neurologist. I have, of course, seen other specialists like neuro-ophthalmologists and physical therapists who specialize in vestibular rehabilitation for people with neurodegenerative diseases, but I could probably count the number of appointments I have had with a primary-care physician on one hand... maybe two, I'm really not sure. My point is, all my medical issues have been attributed to MS, and until recently, that has always worked out. But I have finally reached the point where I can only wonder if some of the things I am dealing with actually have nothing to do with MS.
MS has many mimics
I've always been aware of the fact that just because I have MS doesn't mean I can't still get sick in other ways, but that reality is hard to see for a couple reasons. Reason one is I have primarily relied on a neurologist for all my healthcare, and the problem with that is if you were to show a doctor a list of symptoms that a theoretical patient has, he/she is probably going to think it is caused by an illness related to their specialty. An oncologist is going to see cancer, a doctor who specializes in infectious diseases is going to see an infection, and a neurologist is going to see a neurological disorder; at least that is how my mind's eye sees it. The problem with MS is that there are so many symptoms that can mimic other health issues or maybe even hide them.
Developing an unrelated condition
So what if I developed a medical issue separate from MS but all the symptoms of that issue are also symptoms of MS, and so the appearance of these new symptoms were simply assumed to be due to MS disease progression? Even though I feel like I am pretty aware of that assumption being a very real possibility, it's hard to not take the word of your neurologist, who you probably trust a great deal, and just accept that something new is due to MS.
I always blame MS
That sort of highlights the second reason it is hard to see the possibility that a new symptom may be caused by something other than MS; I myself have personally grown used to just assuming that "everything is MS". I feel dizzy? MS. I feel nauseous? MS. I feel fatigued? MS. I feel weak? MS. Anytime something feels out of the ordinary I almost always just blame it on my MS, but all those symptoms (for example) are pretty general to other medical issues that might require a treatment different than steroids. "But Matt," people say, "what are the odds that you would have MS and something else?" Well, I usually respond to that by saying, "What are the odds that a male who just turned 20 would be diagnosed with MS? Not very high yet it happened to me. I don't feel like 'the odds' are usually on my side in life."
A new creature
I have had this disease for just under 8 years, and I have experienced a whole lot. I have felt bad, terrible, and worse but I have always been able to power through and eventually find something that helps treat my ailments to some degree... but lately? Nothing seems to be helping. My fatigue is far worse than I have ever felt despite all the medication I am now on for it, I feel generally weak, nauseous, I have no appetite, and because of all that, I feel like I am just wasting away. I don't know how to express the resulting feeling of severe hopelessness I have been living with. I have been feeling like something is wrong for a while now, I don't know what but I know something just isn't right. Most of my complaints definitely sound like they are just MS, but it's like I have been living with this creature called Multiple Sclerosis for so long, and then all of a sudden a creature that looks almost identical to the one I have been living with just showed up, but no one else can see that it's different, just me. Am I just going crazy?
Well regardless, all I can really say is that I really started noticing myself losing a ton of weight about 2 years ago, but we checked my thyroid and it was fine... My neurologist looked at my labs and said, "nothing is wrong," so I reluctantly took his word and that was that. Nothing really came of it, and I just figured that "this must be how things are now," but that left one question unanswered. The question I hate to leave lingering more than any other but a question I have been just too fatigued to even bother trying to answer. "Why?" Why is this going on? What changed?
Avoiding seeking answers online
Now, please don't try to diagnose me over the internet. I intentionally didn't mention a lot of the symptoms that have really been weighing me down as well as the illnesses in my family history that may have something to do with all of this because I am not looking for answers online. I sort of subscribe to the idea that when people try to self-diagnose online, they typically scare themselves into thinking it is something terrible, because like I said before, most of these symptoms are so general that you could fit them into almost any diagnosis, but that doesn't mean that that's what it is.
Seeing a new doctorThat is the whole point of this post; to illustrate that, depending on what symptoms you are dealing with and where/who you seek answers from, it is really easy to either just assume that everything is caused by your MS or that you are dying of some rare, super nose-cancer you heard about online. Just because we may have MS doesn't mean we can't still get sick in some other way, and if you didn't have MS what would you do? You would see a doctor about it. Not just a neurologist but doctors of other specialties to see what they see when looking at your list of complaints because maybe it's not all caused by MS?
How many specialists did you see before finding "The One"?