Ask the Expert: Understanding my Multiple Sclerosis Diagnosis
Ashley Seace, AOS Care Manager – email@example.com
I recently was diagnosed with Multiple Sclerosis, and I don’t really know what to expect. I am fearful of this diagnosis and what all is going to come with the symptoms. How is this going to affect my life? Can you provide me with some insight to this disease?
I absolutely can provide you with some insight! It is completely normal for you to be afraid and unsure of this diagnosis. Multiple Sclerosis (MS) affects everyone differently, so I understand why you might be scared. The best thing to do is to learn about this disease and learn ways to alleviate the symptoms. It is important for you and your family to understand that MS is an invisible disease. People will not know you have it by looking at you, but that does not invalidate your fears or make you any less of a person. It is hard for others to understand invisible disorders because they cannot see what is going on, so educating others is also crucial, but not always your job.
To find out if you have MS, your doctor can do blood tests, a spinal tap, an MRI, or an Evoked Potential Test, which records how your nervous system responds to stimuli. Multiple Sclerosis is a disease that attacks the Central Nervous System (CNS). The CNS is the brain and spinal cord. The Myelin Sheath, the fatty substance that covers your nerves, starts to deteriorate and you feel the effects of that. So, what symptoms might you begin to have? You might start to notice numbness or weakness in your limbs, electric-shock sensations with different neck movements, a tremor, a lack of coordination, vision problems, fatigue, dizziness, tingling, or bladder and bowel incontinence. These are common in individuals with MS. However, they are all manageable through medications, therapies, and different holistic methods. Later, I will discuss some options for treating MS.
What is the disease progression? Again, this looks differently for everyone. Most diagnoses are a relapsing-remitting course, meaning you might experience periods of symptoms relapsing over a few days to weeks, then you have a quiet period of a few months to even years. Within 10 to 20 years of the diagnosis, you might develop secondary-progressive MS which is a progression of the symptoms with and without periods of remission. As the symptoms worsen, problems with mobility and gait become more prominent. Eventually, your diagnosis can turn into primary-progressive MS, which is when there are no relapses for your symptoms.
While there is no cure for MS, you can treat it in various ways. When you have an attack, your doctor might prescribe corticosteroids. These could be oral or intravenous medications to reduce inflammation in the nerves. Your doctor could also prescribe a plasma exchange. This would be done if you have new, severe symptoms that don’t respond to steroids. Your doctor can also prescribe injectable medications, oral medications, or infusion treatments to modify the progression of your MS. Each pharmaceutical treatment will work differently for each person, so it is important for you to maintain open communication with your providers to decide if you should continue certain medications.
Non-pharmaceutical methods of treating MS include physical therapy, occupational therapy, speech therapy, massage therapy, and acupuncture. These are encouraged because they can get your body moving and provide some relief to the pain you are feeling. Doctors often encourage regular exercise, balanced diets, keeping the body cool, and resting as much as possible to alleviate your symptoms as well.
If you are unsure about which doctors to work with or finding ways to alleviate the symptoms at home, you might want to consider working with a care manager. A care manager can help find these resources and help implement these new tools into your daily life. They can also provide you with a support system and attend appointments with you so you can focus on what the doctor is saying.
Receiving an MS diagnosis is a scary thing. There is a lot that is still unknown about MS. Because it affects everyone differently, doctors sometimes treat patients with a trial-and-error mindset until they get the best results. However, MS is a manageable disease with medications and non-pharmaceutical methods. If you find yourself needing extra support, especially financially, consider checking out the National Multiple Sclerosis Society and the Multiple Sclerosis Foundation. They can provide you with educational tools, support groups, and financial assistance via grants.