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Hello everyone, this is an interview about ‘Living with Multiple Sclerosis’ as part of the Multiple Sclerosis Awareness Month of March.
Our interviewee has requested to remain anonymous during this interview and because of the importance of this discussion about MS we are happy to accept.
Thank-you for taking your time to answer our questions so we may better learn and understand what it is like to live with multiple sclerosis (MS) every day. It is our pleasure to find out more.
1. Can you tell us about how and when you were diagnosed with MS?
I was diagnosed with MS on April 5, 2004. I was really symptomatic of the disease since I was a young child. I used to cry that my legs hurt and I never slept like a normal kid. When I was in 7th grade my legs started giving out from under me. I thought I was passing out, but looking back it was really muscle weakness that caused my legs to give out. I also had cognitive dysfunctions even back in my childhood. School was really hard for me and I had to fight my way through. Towards the end of high school, I started to feel tired all the time and had unexplained vision issues. I started to experience numbness and tingling in my feet and legs right out of high school. Since my MRIs were normal, my doctor basically blew me off and didn’t think anything of it. In the early 2000s, I started to completely lose vision in my right eye from time to time but it would always come back. In 2005, with another bout of vision problems, my neurologist ran a complete MRI of my head, neck, and spine with the understanding that if it came back normal she would order a lumbar puncture. I think she said that to scare me out of insisting on the full MRI. 5 years prior to this I had picked up on the symptoms of MS and figured it out and I hounded her about the possibility of MS. She insisted that I did not have MS. When that full MRI came back “normal,” she indeed ordered the lumbar puncture and I went through with it. Sadly, they ordered just the basic panel and not the specific panel on my cerebrospinal fluid to diagnose MS so I had to go through a second lumbar puncture. A day later, she called me and said, “Are you sitting down?” I told her I was and she said the words, “I was confident that it would come back negative for MS, but it is positive. I need you to come in because we have a lot to talk about. And please bring your MRI films.” This was back in the day before images were put on CDs and you got a big envelope with a ton of films that doctors hang on the little X-ray viewer. At my appointment she looked at the films herself and said, “Look right there, there, there, and there,” and pointed to 4 lesions (2 in my brain, 1 in my cervical spine, and 1 in my thoracic spine). So the radiology report missed the diagnosis. Had we not done the lumbar puncture, I may have never gotten a proper diagnosis.
2. How has MS affected your life since then?
The biggest impact MS has had on me is financially. It is really expensive in the USA to live with, treat, and manage MS effectively. It is costly and I’m unable to work. Those two things don’t go together.
3. What are the worst parts of having MS?
For me, living in the USA and having MS is probably the worst part. Everyone knows that the healthcare system here is not only expensive but it also isn’t great. My infusion without insurance is $75,000 per infusion and I get 2 per year. I had a lapse in insurance coverage in December 2023 and I was due for my infusion. I applied for patient assistance BEFORE my infusion and had it all set up. But because my doctor’s office failed to send the drug company the paperwork they requested, my application was closed and I now owe my doctor’s office $75,000 USD. It is always something with MS. I carry decent health insurance that I pay for monthly (not cheap I might add), and I still spend thousands of dollars each year on my out of pocket maximum.
Unpredictability is another bad part of MS. I never know how I’m going to feel from day to day. My legs may go completely numb one day, I may not be able to get out of bed the next day, and the next day I’m completely blind or have muscle spasms so bad that I can’t stand up.
Another challenging part of living with MS is because it is usually relapsing, that means you relapse and then get better. But that also makes it nearly impossible to get approved for social security disability. The fight for disability here in the USA is often years with the assistance of an attorney. The first time I applied, I fought for 4 ½ years and finally had to go back to work. I was almost bankrupt after 4 ½ years without income. I filed again in July due to vision loss affecting my ability to do my job and I have not heard anything yet. It’s now March.
4. You mention grieving for the lost life that you had expected before MS, and the opportunities that you can no longer fulfill. That sounds like a very necessary, but very difficult and painful step to acceptance. Can you tell us more about how you have been feeling?
The hardest part is giving up a job that I love, am passionate about, and spent many years and thousands of dollars getting an education to be able to do. And now I can’t do it anymore. It also has greatly affected my friendships. I have friends that expected me to just be able to do anything at the drop of a hat. But I don’t always have the energy. Sometimes I may have 3 doctors appts in a day and by the end of the day I’m toast and can’t go out that night. If you’ve never heard of the Spoon Theory [https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/] you should read it. It describes my life to T. I have to pick and choose what activities I do just to have enough energy to complete necessary activities of daily living.
5. How can we help to support someone with MS? What is good and what should we avoid?
I would always avoid the phrase, “I understand,” because unless you have MS and go through what I go through on a daily basis, you can’t possibly understand. It diminishes the magnitude of what I feel and what I deal with when people say, “Oh I have this or I have that and I understand.” Just like I don’t understand what it’s like to have cancer. If you have a friend or a loved one with MS, simply ask them what they need. Sometimes a ride to a drs appt, or a meal for their family can make all the difference. Over the past year my disease has progressed rapidly and I discovered that gift cards to local restaurants are a lifesaver for my family after a long day of appointments. Another thing that I think is important is when someone tells you they have MS, don’t automatically respond with, “I’m sorry.” There is nothing for you to be sorry about. It’s not your fault they were diagnosed with MS? Instead, I would say something like, “That must be really scary for you. How can I support you through this,”. This way, you are acknowledging how they must be feeling and asking them for what they need all in one swoop.
6. What else would you like to share with us about your life with MS?
I think the most important thing for anyone to understand about MS is that it’s not a death sentence. Yes it’s hard and difficult to manage, but I’m not going to die tomorrow because I have MS. The other thing is that there are resources available. The National MS Society in the USA has been incredible. They have volunteer navigators there who can help you navigate your journey with MS and find access to whatever you need. The Multiple Sclerosis Association of America has (or used to have) an MRI fund. They also give away free cooling vests to help combat the heat since most MS patients are heat sensitive. They also can help with assistive devices and/or equipment. Bike MS and Walk MS are supported events that raise funds to further research and resources for those living with MS. I received a free trike from a bike MS group called Meat Fight so I’m still able to participate in Bike MS at whatever capacity I can. Both events are fun and a great way to get involved in fundraising and/or volunteering!
Thanks again to our interviewee as well as the interviewer, MistyMagic!
Note that some of the interview was edited slightly mostly for formatting /posting ability
For anyone interested in being a part of this, there is a form here [https://forms.gle/MZ1df1FWtJYHQvuy9]to express your interest in being interviewed as well as volunteering to interview someone else.
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