My MS’ MVA


I was diagnosed with MS three years ago. I’m starting to learn more about MS everyday and I hope to share my experiences with the over two million people who also have MS. My hope is to use a concept from Seth Godin of reaching the minimum viable audience. We are all different, but we share the same disease. 

 
Snowflake

The frustrating aspect of MS is that everybody has different symptoms. This is why it is deemed a snowflake disease. Some people with MS are in wheelchairs and some can walk normally. I can walk, but MS causes me to loose my balance and my temper. This happens infrequently and is called an MS episode.  I take an MS drug called Ocrevus .  It prevents further advances of the disease and works for me!  Unfortunately there isn’t a cure yet. The drug is administered via an infusion once every six months.  It has a 45% effective rate per the FDA. Once I sat next to a person at the infusion center who was on the same drug and angrily shared with me that he didn’t experience similar results.  He must have been in the 55% group :(  

 
 

Social media writes numerous articles on MS.  Most of the articles are sensational to earn attention and clicks.  My friends and family read these articles and ask me how I’m feeling.  They are just concerned and they are surprised by my answer of  “I feel great!”.  At the end of the day I prefer their love and attention.  My wife drives me to my doctor appointments so she can hear ideas from an expert instead of from he internet.  My MS Dr is knowledgeable and calm.  I don’t possess either trait.


I also walk and talk with my longtime college friend. My good memories are still 45%.....she asks a lot of good questions to make sure I’m still above 45❤️






Acceptance

I have started to accept my MS.  When I fill out a new job application I need to check the disability box. My acceptance also includes realizing that there isn’t a cure and that I need to be careful walking.   The only test I accept for  my MS is the MRI that shows how my brain and spinal column looks.   A recent MRI was stable!  Finally my balance remains poor and I still can’t drive a car.  My family shares that I was always a bad driver.  There are several daily routines my Dr asks me to follow.  I now work out on the Elliptical every morning and I take gummy D3 vitamins.  


Thanks for your concern and thoughts.   I hope other MS friends will share their stories.  They will be different than mine.  I’ll share again after my next infusion.  


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