I am not multiple sclerosis and have not been misdiagnosed

I can’t seem to go through a week without someone voicing their opinion as to how I am to rid my body of this monster called multiple sclerosis. Some have suggested that I don’t even have MS at all; that it’s actually Lyme Disease or a deficiency of B12 or Vitamin D and that I just haven’t been properly diagnosed. All of those answers come from a place of a lack of information and too much Google.

Anyone can be tested for Lyme disease, B12 deficiency or low Vitamin D since those are simple tests to perform. I understand that some people in the world have been improperly diagnosed because a doctor rushed through the process and didn’t look at the tests properly, but most of us living with MS are real and not a misdiagnosed statistic.

The difficult thing with diagnosing multiple sclerosis is that there is not one specific test to complete in order to prove you have it. It takes multiple tests to rule out other diseases and even then the signs have to be progressed enough to properly point to MS. The further the progression, the easier the diagnosis.

Mine was and has been rapid progressing so it was easy to determine that I have MS. Within just a few weeks from onset I was diagnosed. Some people are left in limbo for years as the doctors work to rule out other things that mimic MS before being able to make a final diagnosis.

I know that puts a person’s life in a place of uncertainty and at times causes great stress, but if the doctor said it was MS without really knowing for sure, it could be harmful for the patient. MS treatments could cause great harm to someone who does not actually have MS. That’s why the doctor needs to be certain.

A good Neurologist knows what to look for, so if you are stuck in limbo land, find a Neurologist to get tests done and if needed, get a second (or third) opinion. And be thankful if the problems haven’t progressed far enough to truly detect or if it is determined to not be MS. Those of us living with progressive MS wish we were so lucky.

I also get messages from people informing me of how I can be cured. It’s bad enough to be told I’ve been misdiagnosed, but to be told I could easily be disease free “if I only _______” causes even greater stress. Just because someone was supposedly healed of MS by going to a prayer meeting, taking a certain set of vitamins and supplements, undergoing bee sting therapy, or eating a specific diet doesn’t mean it will do the same for me. We are all individuals with unique DNA and cellular makeup.

The question that really matters is can you go through the hard times in life and still find something of purpose to live for? Can you face tragedy with the courage of a lion even if you do it trembling? Can you see the good in the progression of a terrible disease? Can you tune out all the opinions and voices out there trying to tell you how to live your life and just be yourself?

Don’t ever let someone’s opinion of you affect who you are, and don’t let MS define you either. You know who you are more than anybody else on the planet. You are the one getting out of bed each morning and forging ahead in the struggle. You are not a diagnosis, a misdiagnosis, or a specific disease or ailment. You are oh, so much more.

Hold your head up and go through your day today with confidence knowing that you are amazing, beautiful and on a journey that has the potential to inspire others as they watch your quivering courage. You have what it takes to get through the days and weeks ahead. You are strong enough. You are brave enough. You are tough enough.

Be yourself, whoever you are!

MS Gets on My NervesMS WarriorMS Superhero


2 replies
  1. Peggy
    Peggy says:

    I’ve heard those too…as you say said in ignorance. I so wish it was so easy! When 1st went to Dr she did a test for Lyme disease then sent me too Rheumatologist who listened and sent me to neuro. he did MRI and diagnosed MS but I had 2nd opinion from neuro at MS ctr here in Atlanta that a good friend with MS recommended.

    Love that thought for today:
    I am not afraid of storms for I am learning how to sail my ship. ― Louisa May Alcott

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope you must have some ignorant people around you. Also some idiot companies that are trying to get you spending your life savings. I have found the best way of spending your time with good people and you don’t get silly things happening.


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