Being diagnosed with Multiple Sclerosis can be a hard time. There is a lot of uncertainty, a feeling of being out of control and obviously, uncomfortable symptoms.
However, there is so much support available to you.
I’ve been living with MS for almost 12 years. These are some things I wish I knew when I was diagnosed.
There is no cure, but absolutely treatment.
Unfortunately, there is no outright cure for MS. However, there are plenty of options for treatments. There are medications (called Disease Modifying Treatments: DMTs) that have been very successful at delaying progression and resolving symptoms. There are also many options for holistic treatments as well. You can use diet, exercise, stress management strategies, acupuncture, chiropractic care among others to also help your symptoms.
These two options, medication and holistic methods are not mutually exclusive. I’ve been on medication since my diagnosis AND I’m utilizing holistic methods to help control my MS symptoms the best.
Learn about MS.
Knowledge Is power. I have found over the years that the more I know about MS and how it can present itself, the more comfortable I am. I know that the articles I read don’t correspond to my specific situation, but they can help me to feel a little bit more prepared about what may come down the road.
The one part I would caution you against is don’t let reading about MS scare you. Obviously it’s scary to read about someone who progressed to an aggressive form of MS, I get that. But that situation is not you and your situation.
Compile a team & support system.
MS is a lifelong disease. You will need a solid medical team as well as a support system as well. Each one of our treatment teams will look different, because we have different needs. But a primary care doctor and a neurologist who is well-versed in MS, is a good place to start.
A support system is really important as well. This might be a support group, therapist, friends and family. Make sure they are people who you trust and are comfortable with speaking to them about your disease.
Also, if you find that you are not getting the support, treatment or care that you need and deserve, advocate for yourself. If you need to switch providers to find quality care, then do so. There Is no rule saying you have to stay with the same doctor forever.
Symptoms are like messengers, they communicate to us. If we are not paying attention we might miss the message.
One of the ways that I pay attention to the messages and symptoms is through symptom tracking. I take a quick inventory each morning of my usual symptoms and see how they are presenting that day.
This helps me to know if I need to limit my activity that day or if I can potentially do more. I’m also able to talk to my neurologist about my symptoms clearer, instead of showing up to the appointment and forgetting how I felt for the past few months.
I know this is a scary time for you. It might feel like your life is over or the world is ending. You might be incredibly angry and confused about why this happened to you.
Feel those feelings. Express the rage. Cry it out.
Life won’t feel this confusing and complicated forever. There will be a time when you look back to this moment and are shocked at how far you’ve come.
You’ve got this friend.