The worst relapse I had was probably the one that came on Christmas day 2013 after being in the hospital with a spinal hematoma for a week after Thanksgiving. That relapse lasted two months even after I did the three day dose of high steroids and physical therapy. To make matters worse, my right arm was completely paralyzed I could only move my hand which being right handed dominated made it even harder.
Unfortunately, since then I have had several mornings when I woke up to find my arm paralyzed. It has happened 4-5 times since I got full use of my arm back in mid-February. The paralysis also struck my left arm but since it didn't lasts for 24 hours some of the time there wasn't much I could do.
Before something that be considered a relapse the symptom has to be constant for 24 hours. The first 24 hours are always full of anxiety and makes me nervous. Since mid-February every time I had an issue the first thing I did was check the clock.
It became unusual because I started getting MS symptoms along with coughing up mucus. I was fairly certain that the mucus was infected, but I wasn't having a runny nose nor was it bronchitis. The first two times right when I was going to make an appointment with my ENT and the cough along with the mucus was gone. The first time not only was my arm paralyzed, but there was shooting pain from my neck down my arm if I moved a certain way.
I had gone for blood work (normal labs I already had scheduled to check my CBC and iron levels) the day the pain got worse and my hematologist was concerned that my white blood cell count was high. After telling the hematologist about the random coughing events, she ordered the blood work to be redone and an x-ray to check my lungs but the other tests results (5 days after the first blood work).
My arm slowly got better, but it was slow progress. I had talked to my doctor about high dose steroids, which is pretty much the only "treatment" for MS, but I wasn't fired up about taking them again. Steroids can be great, but there are also many dangers you have to be aware of when making a decision. As long as I was getting better I was okay without steroids I was okay with it.
A month or so passed and then MS hit me hard! I had gotten up in the middle of the night and realized my leg was weak and I couldn't walk without assistance. From that moment I was in shear panic mode! I realized I couldn't walk to get a glass of water (which was my attempt at getting up), luckily I found water close to my bed so I didn't have to wake anyone up. The next morning (a Sunday thank goodness!) I realized that I hadn't gotten strength in my leg yet so I called our house phone from my cell.
I was terrified, filled with anxiety, and calmly asking my mom to come help me. At first she didn't understand why I needed help, so as calmly as I could I explained to her that my leg was weak. Luckily we had crutches from a knee surgery I had years ago, but I still made a request that took every part of me to ask: I asked my mom if should could go to CVS and get a cane. Of course she said she would, it still killed me because I'm 26 years old and shouldn't need a cane. But, we both knew it would make it easier to get around.
The week progressed and I developed more MS symptoms. My left arm was paralyzed, my left leg was weak, the right leg was numb and the cough was back. This time the cough and infected mucus was back fast. I also called my neurologist who offered IV steroids, but I have horrible veins. The week this happened was my last iron infusion, which took more than one IV to get it in.
My neurologist was also out of town, so I talked to the nurse who did say I could have steroids if it was something I wanted to try. I pushed it back, but finally went to the ENT about my cough. It turns out I had an upper respitory infection, but it hadn't turned into bronchitis. I was given antibiotics for two weeks, once I told the nurse that she said it would be a good to take the antibiotics for at least the weekend and then reevaluate if I still needed steroids.
I am so lucky!!! I took the five doses of the antibiotics and I was already starting to feel better. While I was still experiencing symptoms they were slowly going away. So now, my I had to worry about the 24 hr rule AND that a small infection can cause an array of MS symptoms.
The more I "know" about this disease the more I don't get how it all works. I have had two brain MRIs this year (in January and July), but neither one showed an active lesion in the area that one "should" have been with the issues I've been having with my arm(s). The MRI I have in January was during my relapse with my arm, but there was not a lesion in the area. However, at that appointment I remember the doctor telling me that I was obviously in a relapse because I couldn't move my arm. Right now it just adds to my confusion and I have a "new" normal that includes my arm issues.
No matter what happens this little guy will always have my back. He doesn't care if I have to use a cane, a wheel chair, etc. Snuggles is always with me and he's what keeps me going when I'm having bad days.
