Do I or Don’t I have MS?

I was diagnosed with Primary Progressive MS in 1998 by a World Famous Neurologist whose name I can’t recall, and that is a problem because now I have been told that I don’t have MS by another neurologist yet they can’t tell me what is wrong. I am now in limbo!

My symptoms started with monthly five day migraine headaches that could not be controlled by any medications. The next symptom was a sporadic tremor in my right leg, and then I started having dizzy spells every time I stood up from my desk, so I would have to wait until the room stopped spinning before I could start to walk anywhere. I next started losing my hearing in my right ear.

It was after one of my migraines that my symptoms increased the most. Usually after I would have a migraine, it would take me a couple of days to get back to normal, but this time I came out of it dizzy and extremely tired. Because I had been told by my ear specialist that if my hearing didn’t come back in a couple of months they would do an MRI, I decided to ask my neurologist if I could have one done. I was at my primary care doctor about the dizziness when I was told I needed to go back to my neurologist because something had shown up on the MRI. When I went back to the neurolgist, he told me that two lesions had shown up on the MRI, so I might have MS. However, after he did a spinal tap which came out clear, he told me that I didn’t have MS but that my symptoms were from my migraine. He then handed me a whole bag of drug samples to try.

Because he knew that I had really bad reactions to most drugs, I got really mad at him. I went home and threw out every prescription that I had been taking, and then refused to go to any more doctors. However, my symptoms were continuing to increase. I started having so much trouble walking that I had to use a cane, and I also started to have a permanent tremor on the right side of my body.

After increasing symptoms for six months, I decided to go see a “world famous” neurologist I had been told about. When he examined me, he said that I had MS. I told him that I was concerned about taking the ABC drugs because of my problems with drug reactions. He told me I didn’t need to worry about it, because I had Primary Progressive MS and so the ABC drugs wouldn’t work any way.

I then went into denial. I was always told as a child that if you were sick, it was just in you head, so even though I had all these symptoms and could no longer work, I decided that it was just because I had had a horrible year. My husband and I had gone through a short breakup and my grandmother, who I adored, had died. I was just tired and stressed, and once I was through grieving for my grandmother I would be back to normal.

I stopped going to doctors and stayed in denial for seven years. I started using a powerchair in 2002, but it wasn’t until I lost my voice in 2005 that I accepted the fact that I had MS. In 2011 is when I started having horrible nerve pain in the palms of my hands, and from my waist to the bottoms of my feet.

Which brings me back to where I began my story. In 2011, I ended up in the hospital for four days not knowing who I was. I was told that it was because I had a urinary tract infection, but I believe it was because I had a bad reaction to some medication that my primary care doctor had prescibed for my pain. After this episode, my doctor said that he wanted me to find a neurologist so that my doctor would have someone he could consult in case this happened again, so I went to see another neurologist. Even though I now have 10 lesions on my brain; I can only walk a few steps; I have tinnitus and loss of hearing in my right ear; I have a continual tremor on the right side of my body; I can only whisper; I feel like I have been scalded on my hands and from my waist down to the bottoms of my feet; and I have extreme fatigue and cognitive problems, the new neurologist told me that I don’t have MS, and yet they couldn’t tell me what I do have. I am now in limbo. I don’t know whether I do or don’t have MS!

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