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Living life with multiple sclerosis is complicated. The complications start at the initial onset of symptoms and continue for the rest of your life. As a patient, you must learn to navigate the healthcare system and make informed decisions about treatment options. You are also faced with new and confusing medical terminology, which can sound like a foreign language at times. Even regular, everyday tasks can seem more complicated with MS. At least this is the case for me. 

Up until I was 28 years old, I never faced any serious illness or injury.  Sure, I would get the cold or the flu from time to time but I never experienced any major medical issues. I saw my primary care doctor once a year for my annual physical and that was about it. I never even had a broken bone. I also didn’t know much about healthcare. At the time, I didn’t work in healthcare, write healthcare articles, nor follow what was happening in healthcare. The only healthcare concern I had was when a player on one of my favorite sports teams would get injured. 

That all changed when I was diagnosed with MS at 28 years old. In the 18 years since I was diagnosed, I have also had major medical issues in addition to my MS which have made life much more complicated. I have suffered a fractured vertebrae that required a fusion, and, recently, I developed acid reflux. While my MS, cervical fusion, and acid reflux are all very different medical conditions, managing MS and other health problems can be very, very complicated. For example, I currently have a pins and needles sensation in my left shoulder, left upper arm, and left chest. It has lasted a couple of weeks now, so I know there is a problem. I have also been experiencing tightness in my chest. The complicated issue here is that all of my chronic health conditions can cause these similar symptoms, so how can I determine which one is flaring up?

My first call was to my neurologist. After he assessed me, he ordered an MRI of my brain and spine. His initial thoughts were that I may be experiencing the MS Hug. The MS Hug is a symptom of MS that feels like an uncomfortable, sometimes painful feeling of tightness or pressure, usually around your stomach or chest. The MS Hug can either be on one or both sides. To determine if it is the MS Hug, however, we first have to rule out other possibilities. My neurologist wants to get an MRI of my cervical spine, which was partially severed when my vertebrae fractured, to rule out any irritation or inflammation in the area of my surgery and to ensure that the new symptoms aren’t related to my spinal injury. Once the results are back from the MRI, we will be able to tell if the symptoms are neurological or something related to my acid reflux. There is also a possibility it could be related to a new cardiac issue, so further tests may be needed. Adding another layer of complexity to this issue is that I switched MS medications last year, which could also explain these new symptoms. 

With so many variables and what-ifs, I am stressed as I wait for my doctors to figure out this new medical mystery. I trust my medical team, however, and I am following their orders. Having the additional health issues along with MS makes getting to the root cause of the problem more complicated. This often means more tests may be required, but I would rather go through extensive testing to make sure we understand the cause problem and how to effectively treat it.

If you are like me, and managing MS and multiple health problems, I recommend making sure you have a list of your specialists, what they do, and what they treat you for. You should also make sure that all specialist visits are communicated with your primary care physician to help you keep track of and coordinate your care. Most of all, listen to your body. No one is a better expert on you than you.