Approaching Your MS Diagnosis
Recently diagnosed with Multiple Sclerosis or know someone who is?
My name is Demitrius Omphroy, Former Professional Soccer player, diagnosed with Multiple Sclerosis at age 21. Here are a few helpful tips that prepared me for my diagnosis.
First things first: Multiple Sclerosis symptoms can usually be managed successfully.
William Sheremata, MD, put it into perspective for all MS Patients:
“Having MS today is much different from what it was in the past because we now have a number of new and promising treatments that do a good job at controlling symptoms.”
This is great news and there definitely is hope!
Approaching Your MS Diagnosis
If you’re newly diagnosed with MS or know of an individual that is seeking advice, these tips can help!
1. Learn About The Disease As Much As Possible
There are many misconceptions about MS, and your diagnosis can be scarier than it should be. MS is a chronic autoimmune disease affecting the central nervous system. It’s caused by the immune system attacking myelin, the protective insulation covering nerve fibers in the brain and spinal cord. Myelin is destroyed and replaced by scars of hardened tissue (lesions), and some underlying nerves are damaged. But MS is almost never fatal, and many people diagnosed with the disease never need a wheelchair. When in doubt, ALWAYS chat with your Neurologist. Let them be your Quarterback in this fight, they will direct you in the right direction.
2. Double Check Your Multiple Sclerosis Diagnosis
Be sure your MS diagnosis is definitive. MS is not an easy disease to diagnosis, so getting a definitive diagnosis can be a waiting game. Various tests may be used to make a diagnosis, including magnetic resonance imaging (MRI), evoked potentials (EP), and spinal fluid analysis (spinal tap), as well as a neurological exam. There have been many cases where people get mis-diagnosed because of common symptoms to MS. Make sure your doctor is getting their facts straight!
3. Every MS Diagnosis is Different
No two people have exact MS symptoms, and you may have different symptoms from time to time. Over the course of your disease it’s been studied that symptoms tend to change and can be unpredictable. Make sure you are keeping track of YOUR symptoms and take note of changes.
4. Seriously Explore MS treatment
The goal of MS treatment is to control symptoms and improve the patient’s quality of life.
A number of FDA-approved medications have been shown to “modify” or slow down the progression of MS and lessen the frequency and severity of MS attacks. We live in a day in age where there is so much advancement in medicine and research. It is necessary to explore treatment in my opinion!
5. Keep an MS Diary
Keeping a record of your MS symptoms and how you are feeling will help your doctor determine how the disease is progressing and whether the medications you are taking are working. This will also help your doctor recognize a relapse, which is characterized by a worsening of previous symptoms or the appearance of a new symptom that lasts more than 24 hours. If you think you’re having MS symptoms, write them down in a log. Include when the symptoms happened, details of what they felt like, and how long they lasted. I like to call this part of the treatment your “MS Diary.” You have your own personal experiences with this disease so make sure to take note of anything and everything. What do you remember about 25 weeks ago on a Thursday? Exactly. That’s what is great about keeping this journal. you wont forget those small details!
6. Understanding MS Triggers
Extreme fatigue is a common indicator of an impending relapse, which can last for days, weeks, or months.
Stress, smoking, fever, hot baths, and sun exposure are believed to contribute to the worsening of MS symptoms and relapses. Additionally, drinking alcohol in excess is discouraged for people with MS because intoxication causes poor coordination and slurred speech, which can worsen or add to existing MS symptoms. The rule of thumb is: MODERATION
We all live different lives and have different diets, try to keep things that aren’t the best for us in moderation. Minimizing these things can increase our chance to thrive while battling this disease.
7. Find the Right Neurologist For You
I couldn’t agree more with this. MS, for now, is a lifelong disease, so it’s important to be under the care of an MS specialist who is a good match for you. The neurologist who provided your initial MS diagnosis may not be the specialist you want to stick with for life. Your local chapter of the National MS Society should have a listing of nearby neurologists specializing in MS. Support groups for MS patients (available through hospitals and the National MS Society) are also helpful for getting doctor referrals. Don’t be afraid to speak up if you aren’t happy with your specialist. At the end of the day, they work for you, not the other way around. I’ve gone through four Neurologists in six years…sometimes that’s the way it goes!
8. Complementing Therapies
In addition to taking medication to control your MS symptoms, you should consider things like acupuncture, guided imagery, meditation, massage, tai chi, yoga, and eating healthier. Battling is more than just being on a treatment. Think about how you can incorporate these things into your every day life. Living healthier sets your body up to succeed.
9. Stay Strong and Build a Support Circle
Stay strong and never give up hope. There are so many supports groups out there that picked me up when I felt like I had hit rock bottom with my diagnosis. Build your support circle to check in on each other. Whether it is with family, friends, or other MS Patients, hold each other accountable and commit to helping each other get through this fight. There is no cure for MS, but with the amount of funding and research going into this disease, we have the ability to fight this disease and live with manageable symptoms. Never give up, and if you ever feel yourself sliding, feel free to reach out to me personally at the WeHeartHealth Foundation
You are worth it! Together we define our future.