Having Multiple Sclerosis (MS) as a new mom

Before I found out I was pregnant I was having sever headaches with vision issues and experiencing balance along with memory problems. I started with one neurologist and they did sever test in office to test my coordination skills, tested my reflexes and examined my eyes. Then sent me for a MRI of my brain and spine. The most time consuming part of experiencing neurologic issues is making it through a full day at work staring at a computer screen and driving home that night. After spending 4 hours in the imagining depart at the hospital near me I wanted for a call from my doctors office. It took a week before I got a call letting me know they got the results and would go over them at my next appointment.

The soonest I could get back in was over a month wait. This is the means the longest I’ve waiting to see a specialist doctor, but u was happy it was only 4 weeks…. This was something I could live with. I arrived at my appointment early and very nervous to be told that the results showed I wasn’t having any issues. I told the doctor there had to be other tests he could do and he replied no, but here are some meds for your headaches. The following week I called to another Nuerologist and requested they review my imagines and schedule me for a second opinion. The office called me a few days later to let me know they could get me in for an appointment in 2 weeks. I was so excited because this could be the time that a doctor took me serious and give me answers.

When the day arrived for my appointment I was nervous and had sever anxiety waiting in the exam room for the doctor. The doctor did double the amount of coordination tests that the first doctor did and notes some serious differences from the norm. She said me down and we discussed the differences between my MRI scans and what is expected for 29 years old. She told me my scans were abnormal with the about of damage there was to the grey matter in my brain. She compared the scan they got to the one I had after a head injury in 2012. She was surprised that one episode caused 10 brain lesions to show up. I told her that I had being having these same symptoms that got worse each time I had them for over 3 years with one happening ever 6 months to a year. The doctor was very kind and compassionate compared to the first doctor I saw who said I was “Crazy”. She told me they had to confirm a diagnosis to start me on a treatment plan to avoid further progression as well as prevent permanent damage. She outlined what to expect over the next few months as they worked with me and my insurance to cover and fill out paperwork for treatment, but first we needed a spinal tap to compare the MRI results to. She said this was the only way they could start treatment.

I informed the doctor I was pregnant and she asked how far along I was. I had to think what week I was confirmed pregnant and how many weeks out from there we were now. I counted the weeks in my head slowly as I begin to reply “14 weeks”. She said that being pregnant made it harder to do since they couldn’t use dye to help guide them to the spinal column. She assured me that they could do it in the office and she would be the one doing it. Luckily they could get me in that week.

To say the whole experience was painful would be a complete lie! I didn’t know what to expect, but I didn’t expect it to be as stressful or painful as it was. When I showed up they showed me to a room and told me it would be 10-15 mins before the doctor would be in to begin. The doctor came in and started pulling out packages from the cabinets full of surgical equipment as she explained that she would examine by spine first for where to best insert the needle. Then she would inject lidocaine into the area to make sure the pain was minimal. She step aside and begin drawing up the lidocaine followed by would you sit face down in the pillow of the chair. I sat down and she began rubbing betadine on my back to clean the area. Before she stuck me she said take a deep breath and try to relax. I tried my best to do just that when she stuck the first needle in…. At first it wasn’t painful until she started to advance the catheter causing sharp pain to shot down my left leg. The next attempt was right below that one and the same thing happened, but this pain was down my right leg. She asked if I was doing ok and I told her I had to puke. She handed me a trash can and all I could do was gag into it. She gave me a few moment to catch my breath and stop crying. She pulled up more lidocaine and tried two more times. The second try that time was smoother than the three before that. As she advance I could feel major pressure in my lower back, but nothing too awful. She informed me that she was in far enough and could collect fluid to send of. I focused on my breathing and tried to steady my breath.

She pulled the catheter out and covered the spot with some guaze followed by a bandage. She started labeling the test tube and told me that the results would take a week to come back and they would let me know once they had them. As she cleaned up her area she told me I need to lay on the exam bed for 30 mins to an hour before leaving to prevent leakage. Right before she left she said that I could experience headaches, back pain and sore procedure spot. She said if that persisted longer than a few days I would need to come back for a spinal patch to prevent further issues. I left the appointment sore and extremely out of it. By the time I got home I started having braxton hicks contractions which lasted for 3 hours. I was so worried that I would have to go to the labor and delivery department to get checked out when the cramps started to go away and I stopped feeling sick to my stomach.

The week that followed was an awful mess full of pain and nonstop headaches! It started that day with dizziness, nausea, and a headache that soon grew to take over my whole life. The dr said a leakage of cerebrospinal fluid (CSF) could happen. The only thing I found the help with the symptoms was laying flat and avoiding moving my neck at all costs. The week dragged on as my week got closer to Friday. On Thursday I was laying down unable to move or eat without sever pain. I told my fiancé if it was still there the following day I would go to the ER as the dr office told me they couldn’t do a patch till the following week. Thankfully the following day I was able to sit up for 30 mins or longer and could eat without the dizziness.

The results came back confirming what I expected…. Multiple sclerosis or MS. The doctor confirmed when I was due to delivery and she marked it in her notes to set up my first treatment for the month following that as they were concerned with starting me on it while I was pregnant. MS was something I dealt with a lot as a child since my mom had it and died at 45 because of it. My worst fear was being diagnosed with it and dying at such an age too. I don’t know how long I sat and cried with my grandma rubbing my back trying to reassure me that the medical treatments had advanced.

Here we are now 1 month postpartum and getting my first infusion for my MS. The upside to the treatment was leaving feeling refreshed and new. The down side was it took up 2 hours of my life every month. This meant away from work and away from my daughter. How was I going to make up the hours and find child care ? Well my work has been super supportive allowing me to go to my treatment and make up the time another day. Then I also had a very supportive friend group that offered to step in and watch my daughter while I attended my treatments. Always surround yourself with caring, compassionate and supportive people.