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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)
  • Katie Siepierski
    6 years ago

    I belong to the page Multiple Sclerosis Talk on facebook
    https://www.facebook.com/MultipleSclerosisTalk?ref=ts&fref=ts and over the past year or so that I have followed all their posts and fellow follower comments (there are nearly 13,000 members), it seems that many people have encountered a clear lumbar puncture, when in fact they actually do have MS. Though the idea may sound futile, I would see another neurologist, particularly one that specializes in MS, or one that has MS themselves. The exact same thing happened to my mother. She was diagnosed after she had had plenty of symptoms, then went blind in one eye and was hospitalized. Then, about 8 years later, she was told that she doesn’t have MS, yet her head permanently shakes, among other symptoms as well. She went to another neurologist and yes, she does have MS. There is still a lot of “the unknown” when it comes to MS; there is still a lot that is not understood. I am by no means a doctor or neurologist, but from the hundreds and probably thousands of personal stories and experiences I have read, and based on myself too, it does sound like you do have MS. I wish you the best of luck and for answers!

  • Lisa Emrich moderator
    6 years ago

    Hi Neva,
    It must be so very frustrating to be experiencing symptoms and not have a concrete reason for them, nor an effective treatment. I’m sorry that you’ve been experiencing this ambiguity for so many years. Can’t be easy. What does the new neuro offer to you to try to address your symptoms?
    Take care,
    Lisa

  • Poll