I Had Severe Neck Pain At Age 26 And It Turned Out To Be Multiple Sclerosis

It was the summer of 2011 and and it was really hot in my apartment. I started having pain in my neck and back, but I figured it was because I was sleeping with the air conditioner on full blast, which was making my muscles tight. But it kept going on and on, and after a few weeks I woke up and couldn’t move my neck — at all. I was in so much pain. It was about a week before my birthday, and I was about to turn 27.

I thought I had a pinched nerve. I called the doctor and they were able to get me in that day. The doctor agreed that I probably had a pinched nerve, but sent me for an MRI just to be sure.

The next day my doctor called and asked me where I was, and I remember thinking, Oh my gosh, I am dying. I was so scared. They could see lesions, these dots, but weren’t sure what they were because the MRI had been done without contrast dye. The doctor thought it was either MS or one of two other horrible conditions — I don’t even remember what they were — so I had another MRI, this time with contrast.

This was on a Friday and they sent me for the next MRI on Saturday. I got a call about an hour after the scan, and thought, This is not a good sign that my phone is ringing.

I had heard of MS, but I didn’t really know much about it. So of course I did the one thing you should never do — I went to Google. I looked at all these forums and was like, Oh my god this is the end of the world. But it’s not. And it wasn’t.

Multiple sclerosis, or MS, is an autoimmune disorder that affects the nerve cells in your brain and your spinal cord. There are so many different symptoms because it varies depending on where the lesions are located and external factors, such as exposure to heat and stress. MS symptoms can include fatigue, tingling and numbness, problems with speech, muscles, and coordination, as well as sensitivity to heat and vision problems. No two people are going to have the exact same symptoms, and the symptoms can flare and subside, so it depends on what is going on in your body and your life.

It can sometimes take years to get a diagnosis, so I was lucky that I didn’t go to 15 doctors to figure out what was wrong. After I thought about it, I might have had it even sooner. In the couple years before the diagnosis, I had had pain in my hands and some tingling, and was tired all the time — things you don’t even realize could be an actual problem. But I want to emphasize that a lot of people have neck pain and it’s not usually MS. The average person in the US has a 0.1% chance of developing this disease, about 1 in 750, according to the National Multiple Sclerosis Society.

I was seeing a therapist and she really helped. I know it sounds cliché, but having a positive mindset is so important. And it’s not like you can just say, ‘I’m going to be a positive person today." You really have to work at it. But I do think that you can change your thought patterns, sort of like retraining your brain.

In addition, I started blogging about how I was feeling and connecting with other people who have MS. People started reaching out to me and I formed this support network, which was incredible. I ended up meeting one of my best friends because of this. I was watching a National MS Society video in which Marni Blake Ellis interviewed Jack Osbourne, who also has MS. I reached out to Marni, we got coffee, and we’ve been friends ever since.

Marni is the founder of MSquared: Music Against MS, which raises funds for MS research, and we work on charity events together. We have an event on May 16 in New York, which will be hosted by HQ’s Scott Rogowsky.