Living with multiple sclerosis

Hey everyone, I’m not one to ask for help but I decided it was time to suck up my pride after having several people tell me to do this. Here is a little bit of my back story – I am 25 (almost 26) years old. I’m a single mother to a 5-year-old daughter. While raising her, I worked full time, and I finished college with my bachelors in social work. The day after I passed my state social work exam, I was diagnosed with Multiple sclerosis (MS). For those whom don’t know what MS is, it is a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include but are not limited to, numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue. At this time there is no explanation as to why someone gets MS as well as no cure for MS. When I was diagnosed, I put a brave face on and thanked God for all the good things in my life.

 Fast forward several months – I just bought my own house for my daughter and I. I saved and saved in order to not only buy but furnish the house as well. The day after we moved in the house was broken into and the thief’s stole everything. Once again, I thanked God for all the good things in my life.

I had been doing shots 3 times a week to help stop the progression of my disease.  I went to see my neurologist just for a check up as I had just had another MRI of my brain and this would be the “base MRI” to tell how my medication was working 6 months after that. For these medications to go into full affect it typically takes 6 months and then another MRI would be done to see how it was truly working, so I was previously told nothing would change at this check-up. My father and daughter came along with me. After the doctor came in the room, she kept asking me if it was okay if my father and daughter heard us talk. I kept reassuring her that it was fine. My neurologist asked me one more time “are you sure you want them to hear what I’m going to tell you when I show you these scans.” I knew then, that it was bad news so I asked my dad to take my daughter in the waiting room.

The doctor proceeded to show me my MRI scans, which lit up with new and active lesions. These lesions are part of my brain that this disease has destroyed and I will never be able to get back (unless some new medicine is created). I knew that I would have some new lesions because I’ve noticed some changes in my body, but I did not expect to see the number of new ones that were present as well as the size of them. The doctor informed me that I needed to start the strongest treatment approach, which would be infusions. She stated that she did not want to keep me on my current treatment any longer due to how aggressive my disease seems to be. The infusions that I will be doing will cost around $65,000 per year. I’m hoping that insurance will approve this and I will not have to pay anything. With that being said, insurance won’t pay for me missing work for the infusions, for me missing work for my appointments, for me missing work for my MRI’s. I have already used up my PTO that I had available to cover previous appointments and my neurologist wants me to come for check-ups more often due to severity of my disease, which means more missed hours/days of work.

I feel like life continually throws new battles my way just when I think I’m doing great. If you are unable to donate anything, please just share this link and say a few prayers for my daughter and I. Thank you for taking the time to read this!