No One Understands Me

In 1998, working in a job I loved, I suddenly could not understand what I was saying to people. I went home and then could not speak for three weeks. The doctor said it was just stress from my husband being recently diagnosed with Scleroderma.

In 1999 the leg pain and severe fatigue began. In 2001, I lost all vision in my right eye and began having additional language problems. Neurologists found a ‘spot’ on my brain and ‘funky optic nerve’ in my right eye. I had neuropsych evaluations and testing and was found to have severe language deficits that related to the area of the brain the spot was in. The neurologist wanted to have a long discussion with me – yea, I was abused in a past relationship, yea I was worried about my current husband’s diagnosis, no i don’t think these things relate to what is happening to me, and no I don’t want your DRUGS. I was referred to a neuro psychiatrist. (btw, I went and he said I had a neuro problem)

I stopped going to the dr. What was the point? I don’t completely believe in allopathic medicine – I believe in herbs and natural meds. But how do you find out what is wrong with you if not for a dr? I spent many years on a fairly regular rhythm – spring and fall, always sick – then the relentless fatigue – pain is almost constant by 2002 and worse every year. Every physical – I was a great actor – yep, I’m fantastic.

2012 the bottom fell out. One day in April, I could no longer talk right, walk right, remember anything from one side of the house to the next, pain was incredible – the ER asked me, didn’t I know I had MS? Huh?

In June 2012, a neurologist sat across the room and told me my spinal results said 99.9% MS. Wow, so that’s what this is. He gave me a list of DMDs and told me to pick – okay, I guess I have to do this thing I don’t believe in – I’ll take copaxone. Funny, he wrote in my records that he considered me ‘possible’ MS

My neuro then disappeared – I ended up at Hopkins MS Center in November 2012 when a neurologist there diagnosed me with MS. But he didn’t feel any of my symptoms were MS – he wants me to see a neuro psychiatrist – again?

In 2013 my family doctor diagnosed me with concurrent Fibromyalgia, but when I refuse the drug she prescribes, says she can’t help me anymore.

Why are doctors constantly passing patients off on other doctors, who then pass you back to the original doctor? Why can’t doctors understand some patients do not want their drugs, but could use their support.

The American healthcare crisis is caused by just this kind of idiocy. Not one of these doctors really considered the diagnostic evidence of another of the doctors. Not one of them considered me as a person, with my own beliefs. How are we to navigate life with MS when doctors do not listen to us?

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