Atypical Multiple Sclerosis

In March 2006, a year after symptoms reared their ugly heads, I was still no closer to a diagnosis let alone a neurologist willing to work with me. The last neurologist dangled the carrot then when it wasn’t in the best financial interest if the rather large and well-known clinic in my area she dropped me like a WWE wrestler, flat on the mat with a metal chair.

Still the symptoms worsened.  My two sisters diagnosed with MS, were being treated and doing pretty well. My slide downward was more like an avalanche. My pcp, who was pretty certain I had MS, suggested one more doc.  He was located at a major hospital in a large northeast city about an hour and a half away from me. I hesitantly agreed. So far each neurologist I saw seemed worse than the last. Maybe this wasn’t neurological, but my pcp insisted it was, he was unable to make a diagnosis though, considering he was a general practitioner, internal medicine.

Six weeks later, now late April 2006, we made the journey to see this doctor. He has got to help us, we thought. He works for this great hospital. We even know people who had worked there and gave great reviews of the institution. This was it, I could feel it.

Stumbling into the office I could barely fill out the paperwork, my vertigo was off the hook. My cement laden legs just making it to the office. Hubby all the while by my side, probably more worried than I. I knew something major was wrong; after a year I began to accept it, he hadn’t yet.

This time we only waited a few moments. The doctor actually retrieved us from the waiting room himself. WOW! I felt the slightest twinge of hope like the tiniest bud pushing through the newly thawed earth in spring.

This man, spent about fifteen minutes with me. He couldn’t even pull off the pictures of my MRIs on the CD that I gave him. He spent about ten minutes of that time asking me questions about my childhood. My hubby asked him if he was a neurologist, thinking my pcp made an appointment with the wrong doctor. 

This man didn’t even read the information my pcp sent. His diagnosis was “an unknown disease of pyschological origin”. WHAT??!!?? I sat stunned, unable to talk, utter a word, move. Hubby asked what that meant. According to this man who apparently earned a doctoral degree somewhere it meant I was making up all of this. Clearly this disease was all in my head cleverly devised by me to get out of work, to drop out of family life because I was unhappy. WHAT??!!!??!! He pulled out that new bud just pushing through the thawed earth in spring. Pulled it out roots and all tossing it into metal trash can to die.

My hubby tried to argue with him. I got up, dragged my cement legs to the exam room door and told my hubby we were leaving.  Another few steps and I turned myself around. I had ENOUGH! I told that man exactly what I thought of him. I could not and still cannot bring myself to think of that man as a doctor. He did not help in any way, he was uncaring, pompous, rude and had no medical basis for his diagnosis. 

Then I walked out. My hubby stood looking at this man for a second. The man said he was doing his best. Hubby told him, if that is his best then he needed to change professions. Hubby then escorted me out of the office, down the hall, in the elevator to the lobby, into the garage to our car. Only then did I breathe, but said nothing the entire ride home. 

I am not sure if I spoke when I got home. What was I going to do? It seems the medical profession is great as long as they can diagnose you in the first visit. If they can’t then the problem must be psychological or non-existent. What was I going to do?  

Everyone-hubby, friends, mom, brothers, sisters-reassured me over and over again to keep trying doctors. They gave me the will, hope to live. Looking into my son’s eyes, seeing his face everyday kept me going. Without these people I am not sure where I would be right now. They put me upon their backs and carried me forward. The act of people reaching out to people is so powerful it permanently changes lives. This is the biggest lesson I have learned my entire life. A single act of kindness, of simply putting someone else before yourself, is the miracle of life.