Gelonne’s Life with MS

I am a 62 year old woman. I started the process of getting diagnosed with MS, in 1998. I go to my appointments take my meds as subscribed, travel 5 hours for testing. And now I’m told that I don’t have MS.

The Dr’s don’t know what I have, but it isn’t MS. Humph.

Soo am I supposed to start all over again? I don’t know what to do.

My first neurologist told me that he couldn’t say DEFINITELY that I MS, but, he believed that I have MS.

That was over 20 years ago. Now this Dr. who as only seen me once said I don’t..

Never mind that I have balance problems, that I fall frequently enough to learn how to fall so I don’t hurt myself. Or that I have trouble holding a conversation, or even that I tire easily. My legs always feel like I have pins and needles coursing through my veins.
My family and I have learned to laugh at myself for the symptoms. That doesn’t mean I don’t have MS.

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Comments

View Comments (2)
  • Sycoraxepp
    8 months ago

    I am glad you shared your story, I think I’m in exactly the opposite situation.
    I feel very alone regarding all this and I felt forgotten until recently. I had to be very aggressive with my family dr. I wasnt very good at that to begin with and had to learn. Finally I started bringing a well researched list and I always bring someone now. I dont know if I had been just another complaining old lady or what. When I started bringing someone and stuck to my list, well things started changing. I suggest it because I wonder if they always take us seriously. Maybe give it a try. Let me know how you do. Good luck.

  • Erin Rush moderator
    9 months ago

    Wow gelonne! I have never heard of a situation quite like this. If you haven’t already, I would definitely seek a second (or third!) opinion. A diagnosis of MS, as you well know, is quite serious. And removing that diagnosis is ALSO a serious thing. If you trust your established medical team over this new physician, then I would strongly consider that before you proceed with the new physician.

    I am sorry you are facing this, but thank you so much for sharing a piece of your story with the MultipleSclerosis.net community!

    I am glad you have family and a sense of humor to get you through!

    Best, Erin, MultipleSclerosis.net Team Member.

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