I don’t know about everyone else, but when I hear the word “remission” I see images of victorious, healthy people. They are disease free, maybe even running a marathon for charity. Their faces are bright and cheerful, and they are throwing their arms up in the air in celebration. They are healthy once again, and they have left behind illness like a speed bump on a long and winding road. When I was diagnosed I think someone forgot to tell me that this is not always what remission means for people with MS. I was shocked when I had bad days and continuous symptoms, but yet my MRI showed no new lesions. Was I relapsing or in remission? It was almost impossible to tell at first. I was in remission but my leg still went numb when I walked. I was in remission but I still needed Tegretol to manage nerve pain. I was in remission but I still struggled with bladder issues. None of it made sense at the time!
It wasn’t until I researched, read every textbook I could get my hands on, and earned my MS certification that I really understood what was happening. I learned that I could recover some of the damage done to my nerves, but that the lesions left permanently in my brain and spinal cord would continue to give me symptoms. I learned that my DMD doesn’t take away the damage that is already there, but just tries to prevent new damage from occurring. I learned what triggered my symptoms, and I learned how to read my body. Now I know what is “normal” for me, and what warrants a conversation with my doctor.
The MS Society defines a relapse as any new symptoms or worsening of old symptoms that lasts for more than 24 hours, happens more than 30 days after a previous attack, and that occurs in the absence of another cause such as stress, infection, or an elevation in body temperature. So anytime you have new or worsening symptoms that persist for a day or more, give your doctor a call and let them decide if it is a relapse or not. We always rule out a urinary tract infection (UTI) or any illnesses that could be causing symptoms to occur. MS patients have a higher rate of UTI’s then the normal population. If you do have an infection then we can then treat you with antibiotics and the symptoms should clear along with the infection. If it is a true relapse then your doctor will discuss treatment options such as IV steroids with you.
MS is a rollercoaster, especially during the first couple of years when you are trying to figure it all out. At first it felt like I was waking up in a new body every day. I never knew what to expect or what symptoms I was going to have to deal with that day. It can be difficult to know what is a relapse and what isn’t, but that is why it is so important to have a health care team that knows you and that you trust. It is also why it is so important to have a specialist that has experience with MS patients! Not every symptom means you are having a relapse, and sometimes patients dismiss symptoms as being MS related when they are actually a sign of an unrelated and potentially serious issue. So if you find yourself asking “is this a relapse?” or “is this a MS symptom?” call your doctor or your MS nurse and talk to them about it. It’s what we do all day long!