The Relief of Diagnosis
Being diagnosed with an incurable, chronic illness such as Multiple Sclerosis is never a pleasant experience. However, for many people, getting that final confirmation creates an extreme sense of relief. That sounds pretty peculiar to many people, as getting a diagnosis of Multiple Sclerosis is not an easy process. With no single test to determine the presence of the disease, symptoms that can mimic other illnesses, and doctors that may not be well qualified enough, the road to an MS diagnosis can be a long and uncertain one. After a long journey like that, finally understanding what is wrong with you can bring about a sense of calm and peace, despite what the future may hold.
A rough road
Being diagnosed with MS is actually pretty tough. With no black and white test that can confirm the condition, doctors are left to use a combination of MRIs, spinal taps, evoked potentials, and their own experience (which can be severely lacking or outdated). All of that, coupled with the fact that MS symptoms are shared by other neurological conditions, make getting an official diagnosis difficult. It is not unheard of for the process of getting the correct diagnosis to take years. It often takes multiple doctors and exams over a long period of time, that can often include numerous misdiagnoses, before you get on the right track. I think that most people who haven’t experienced the process of getting diagnosed, really don’t understand how difficult it can be (just one reason I love to recommend the movie “Brain on Fire”).
It’s hard to explain just how frustrating and hopeless it feels when doctors don’t know what is wrong with you. When I went to my first doctor about my symptoms, he literally excused himself so he could go “look in some books”. I’ll tell you this, that’s not ever something you want to hear a doctor say. Even when I was eventually hospitalized (because I suddenly couldn’t walk, among other symptoms), a team of doctors at the hospital was befuddled by my symptoms (I was eventually put into isolation at one point because they were so unsure). To suddenly not be able to do basic functions, like walk or stand, and to have numbness and weakness throughout my body, and have a team of doctors not be able to definitively tell me what was wrong with me was nothing short of a living nightmare. When faced with such unsurety amongst medical professionals, it’s pretty easy for panic to set in.
Getting a diagnosis is a scary journey
Eventually, they thought it might be Guillain-Barre syndrome, but they weren’t all convinced. Once I left the hospital, I would go on to see several specialists and would eventually get the official diagnosis of Multiple Sclerosis. The worst part of my story is that, after years of talking to others with MS, I’ve learned that my path to diagnosis was actually easier and quicker than a lot of people out there. Getting an MS diagnosis really is a journey, and a scary one at that.
When it was finally confirmed that I had Multiple Sclerosis, despite growing up and witnessing the worst the disease can do, I felt some relief (which I think made it much easier to tell my family). The unknown is extremely scary. Finally figuring out what is wrong, no matter what it is, allows you to properly process it. It also allows you to actually fight back. While it was easy to think of the negatives (and again, I grew up with MS all around me, so I was well versed in those negatives), I was also able to feel at peace a bit. It’s hard to fight something when you don’t know what you’re fighting. Getting an official diagnosis meant I was finally able to battle this thing, I was finally ready to take on the future. I knew there would be a lot of work and rough times ahead, but I was relieved to know I could finally get on with it. I knew who my enemy was and I was finally able to fight back.
So, there can be a huge sense of relief in getting the correct diagnosis. My diagnosis was nearly two decades ago; however, it can still be difficult for many people to get the proper diagnosis. Things are improving though: there are more and more doctors who specialize in the disease, and MRIs and other technology have also improved. Just this week, the Academy of Neurology released the results of a study that shows that there are nearly a million people in the United States with MS, more than TWICE the amount that was previously thought. While much of the study deals with estimates, it’s a sure sign that things are moving in the right direction, that much more is known about the disease. A study like that will help people get the correct diagnosis because it will now be more understood that the disease is much more prevalent than previously thought.
Do you ever experience MS bloat?