What not to do before and what to do after your MS diagnosis?
How did you deal with your first signs of what you now know was MS? Just another day of getting older is how I handled it day after day for years. What did you ignore? As for me, it was several things.
My rhythm while snow skiing, water skiing, and the inability to follow a baseball during a game. Which progressed to being unable to run well, balance, and ride a bike. A ladder became my enemy, walking a straight line was a fun challenge.
One thing after another from 1983 until around 2004. I know what you are thinking “boy does a truck have to hit him” well kind of!
When it hit me
My issues hit the wall, sorry for the pun, while walking I needed to run my finger along a wall to walk straight. Explain to customers why I could not walk, look at them and talk at the same time.
At that point, yep you guessed it that truck hit me. Not literally but it did sort of wake me up.
What should you do or what should I have done?
If I only knew then what I know now! Boy does that statement hit home with me indeed. It sure would change a lot of things before and after my diagnosis.
You are probably wondering what I would do differently, aren’t you?
What I would do differently
I will share my experience and what I would change. First, I should have begun my medical journey in 1983 and not 2004 when I could not ignore what I was dealing with anymore.
After 19 years I finally decided to get medical help to figure this out. My balance, vision, dizziness, feet leg numbness, and memory deteriorated more and more. My visit to my Family doctor began a five-year journey seeing a Cardiologist, Ear Nose Throat specialist, Ophthalmologist, Therapist, and finally a Neurologist.
During this medical journey and test after test, there were no solid results to determine the cause. I decided to begin my research in hope of defining what might be the mystery. Luckily, I spoke with someone dealing with the symptoms I was dealing with. He mentioned MS which piqued my interest. Long story short, I researched MS and validated eighty percent of my symptoms were similar. I spoke with my Neurologist, he ordered a spinal tap and bingo MS.
What I learned
What I learned was to be proactive, yes you are aging, however, acting and seeing your doctor is key. By ignoring the changes, you delay a diagnosis, treatment and possibly increase the damage to your health. Had I began my medical journey in 1983, maybe I might have delayed PPMS or avoided progressing to that stage.
What not to do after an MS diagnosis
I’ll share with you what to do and what not to do after your diagnosis based on my experiences. The first thing is to make sure you define an overall plan with your Neurologist. Your plan should include short-term, meaning today moving forward and long-term goals.
Your overall plan should be detailed to include how many office visits per year, annual MRI, consider both brain, spine with/without contrast, therapy, diet, exercise program, and a defined list of current symptoms.
Let’s take a look at each item in your action plan;
Office visits are critical for you and your Neurologist. This is an opportunity to provide details on how you feel. Any new health concerns, medication reactions, or worsening symptoms. Your Neurologist will test your balance, eye movement, physical coordination, and walking speed. You’ll discuss your MRI results, blood work, and medication effectiveness.
I would recommend two visits per year. One in person and one utilizing telehealth.
You should have at least one MRI per year to ensure your current lesions are stable and if you have developed new ones. MRI may include using contrast to help identify inflammation and new lesions. One area to consider every few years is your spine which may indicate a progression from RRMS to SPMS.
Therapy depends on the symptoms you’re dealing with. Your visit could include balance, walking, muscle tightness, spasticity, exercise depending on your need. If you’re dealing with depression your plan might include counseling to provide tools to help with the ups and downs.
My therapy included a combination of balance, stretching, and walking. This approach helped greatly in reducing falls as well as climbing stairs.
Diet and exercise
Two areas that are critical to slowing MS progression, exercise, and diet. Honestly, when my Neurologist mentioned exercise I thought, is he crazy! Yep, he was crazy correct on every level. I finally hit the gym and so surprised at how I felt. Felt alive, had more energy to get out and about. Combined with a well-balanced diet it made a world of difference. Exercise and diet are key to slowing progression.
Your DMT is critical to begin as soon as possible. There are many treatments available although only one for PPMS. Which DMT you begin with depends on the type of symptoms and progression you have, how effective it is in stabilizing MS, and any allergic reactions you have to specific medications.
It is not unusual to try several DMT’s. I started with Copaxone for a few years, moved to Tysabri for two more years, and now Ocrevus for over three years. I will state again it is critical to start ASAP. I delayed starting for several years which caused my MS to progress. Additionally, I passed on Rituximab since it was approved for cancer and arthritis, not MS. I was very surprised to learn years later, the Rituximab formula was modified to create Ocrevus, which I use now. Rituximab is still used to treat MS and very effective.
I hope this has helped and shed some light on the crazy world with MS. I thank you for your time and remember, don’t delay medical treatment, be proactive, create a detailed plan and begin a DMT ASAP. Until next time I wish you the best, stay safe, and healthy.
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